Nyheter

2012-02-02

Intervju: Prata med barn om funktionsnedsättning eller sjukdom

Läs mer på nedanstående länkar:

 

http://www.1177.se/Uppsala-lan/Tema/Barn-och-foraldrar/Barn-i-varden/Barn-med-funktionsnedsattning/Intervju-Om-att-prata-med-barn-om-funktionsnedsattning-eller-sjukdom/

 

http://www.1177.se/Uppsala-lan/Tema/Barn-och-foraldrar/Barn-i-varden/Barn-med-funktionsnedsattning/Berattelseboken/

 

01/28/12: Important Advocacy Webinar: PDUFA Reauthorization

01/26/12: GSK's Clinical Development Plan for Duchenne

01/25/12: Prosensa Raises €23 Million in New Equity Financing

01/18/12: PPMD Awards Stanley Froehner, PhD, $132,322 Grant

01/16/12: NORD's letter to Congressman Stearns

 

MDA Commits $12 Million to Neuromuscular Disease Research2/1/12

 

MDA Funds Development of Utrophin 'Magnet' for DMD/BMD1/17/12

 

Nationwide Children's Podcast Probes Exon Skipping in DMD1/11/2012

 

2012-01-30

01/11/12: The January eNewsletter is here!

01/11/12: Enzyme function may discover muscular dystrophy therapies

01/04/12: AVI Data Safety Monitoring Board Reports No Safety Concerns Identified in Phase IIb Clinical Trial

01/04/12: Halo Therapeutics' HT-100 Receives FDA's Orphan Designation for Duchenne

 

2012-01-16

Inbjudan och anmälningblankett till symposiet i

Göterborg 2012, klicka här

 

2011-12-21

I november månad deltog tre av våra styrelseledamöter i dels Action Duchennes symposium i London dels TREAT-NMD konferensen i Geneve. Nedan finns sammanfattningar upprättade av ledamöterna.

Action Duchennes symposium

TREAT-NMD

Styrelsen kan med stor glädje tillkännage att Stefan Holm även under 2012 kommer att vara stiftelsens ambassadör.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Arbetet med symposiet i Göteborg, den 20-21 april 2012 pågår. 2012 års symposium kommer att bestå av två delar: dag ett innehåller föreläsningar och dag två innehåller workshops. Ledande forskare är inbjudna. Mer information och inbjudan kommer att läggas ut på hemsidan inom kort.

 

Styrelsen vill ta tillfället i akt och önska alla

En riktigt God Jul och ett Gott Nytt År

 

2011-12-20

 

12/16/11: Important Webinar: Understanding Biglycan

12/15/11: PPMD Supports Therapeutic Credit

12/14/11: For Academics - NeuroNEXT Webinar

Hämtat från www.parentprojectmd.org

 

MDA Funds Clinical Studies of Reformulated Drug for DMD12/20/11

 

Hämtat från www.mdausa.org

 

2011-12-16

 

12/08/11: December eNewsletter

12/06/11: Let's make it happen

12/02/11: Ataluren Update (PDF)

11/29/11: Webinar: Fat Embolism Syndrome Following Mild Trauma in Duchenne

11/29/11: Letter to The U.S. Department of Health and Human Services (HHS)

Hämtat från www.parentprojectmd.org

 

Podcast Explores Blocking NF-Kappa B in DMD12/14/11

 

CoQ10, Lisinopril Studied in DMD, BMD, LGMD2C-2F, LGMD2I11/15/11

 

Hämtat från www.mdausa.org

 

2011-11-29

SMT C1100 Receives Orphan Drug Status from FDA

The FDA has granted orphan drug status to the clinical candidate SMT C1100 for Duchenne. The European Medicines Agency had granted SMT C1100 orphan drug status in December 2008. We are excited that SMT C1100 has received orphan status. Orphan designation is given when any compound is developed for a disease or condition that affects less than 200,000 people in the US.
November 28, 2011 | Read more

 

2011-11-23

Clinical Trial Announcement from GSK for Exon 51 Skipping

This is a randomized, double-blind, placebo-controlled trial to study the effectiveness of GSK2402968 in treating ambulant boys with Duchenne muscular dystrophy (DMD). GSK2402968 is an exon 51 skipping therapeutic agent, so this therapy will only work for DMD boys with a mutation correctable by skipping exon 51. Two doses of GSK2402968 and placebo will be used in this study.
November 22, 2011 | Read more

 

Important Webinar: Understanding Fat Embolism Syndrome

With growing concern in the Duchenne community regarding Fat Embolism Syndrone (FES) after a child falls or sustains what would normally be considered a minor injury, Parent Project Muscular Dystrophy has asked a leading expert to present an important webinar on FES. The ultimate goal of this webinar is to empower you with knowledge to have discussions with emergency room doctors and increase the possibility of an FES diagnosis at a critical time.
November 18, 2011 | Read more

 

RND Program Announces Next Round of Projects

The NIH’s TRND program has announced six new drug development projects, including one for Duchenne. The TRND program was developed to accelerate drug development in rare disease. The TRND program has recruited experts in drug development and developed a system for advancing promising compounds. Rather than financial support, TRND works with academics, biotechs, and pharmaceutical companies, selecting promising compounds for rare disease and facilitating the drug development process HTS, optimization, medicinal chemistry, toxicology, etc. TRND selects promising projects with the goal of advancing them to clinical trial.
November 16, 2011 | Read the release

 

AVI Enters Into Collaborations for Development of Two Additional Exon-Skipping Products for Duchenne

AVI BioPharma, Inc., a developer of RNA-based therapeutics, today announced collaborations for the development of two additional exon-skipping drugs, one for exon 45 and one for exon 50, to support AVI's broad-based development program for the treatment of DMD.
November 15, 2011 | Read the release

 

2011-11-11

 

11/10/11: Children's Hospital and Pfizer team up on Duchenne program

11/08/11: November eNewsletter is Here

11/08/11: Prosensa Named Most Innovative European Biotech SME (PDF)

11/08/11: Report from World Muscle Society Meeting - Read Pat's ACE-031 blog | Read Sharon's synopsis of multiple presentations

11/03/11: DuchenneConnect Direct Access Webinar: Updates in Genetic Testing - Listen online | Read the Q&A

11/01/11: PPMD Signs on to Congressional Letter

10/31/11: Moms: We Need You!

10/26/11: NIH Continues Support to Dr. Justin Fallon and Brown University with $1.33M+ to Advance Biglycan to Clinic for Duchenne

10/24/11: Patient advocacy groups turn to open-access publishing to advance research quest

10/20/11: Last Chance: Register for Disney Today

10/19/11: Biglycan Named One of Top 10 “Hot Space” Projects to Watch

10/19/11: Santhera to Present Clinical Data of Catena® in Duchenne at World Muscle Society

10/19/11: Save the Date: DuchenneConnect Direct Access Webinar

10/18/11: Continuing to Recruit: MRI Study

10/18/11: AVI to Present RNA-Based Duchenne Drug Candidate at World Muscle Society

Hämtat från www.parentprojectmd.org

 

Experimental Drug Seems to Slow Respiratory Decline in DMD11/4/11

 

PTC Remains Committed to Ataluren for Nonsense-Mutation DMD/BMD9/15/11

 

Hämtat från www.mdausa.org

 

2011-10-18

Why Animal Research Needs to Improve

Interesting article, points out that mice are not children nor adults. There are major limitations with animal testing, but they can help us, are able to point the way, and provide insight. PPMD’s Pat Furlong points out that, “The caveat to this is that it is important, first and foremost for the research to be conducted with rigor. Without scientific rigor, we will waste money and precious time.”
October 17, 2011 | Read the article

 

NORD Releases Study on Orphan Drug Approval

The National Organization of Rare Disorders released a report in support of its efforts for FDA to codify a flexible approach to the approval of orphan drugs. It examines the basis for agency approval of 135 non-cancer orphan drugs since the Orphan Drug Act was enacted in 1983. PPMD President Pat Furlong is a member of the NORD Board of Directors.
October 12, 2011 | Learn more

 

GSK Study DMD114117 Recruitment Complete

GlaxoSmithKline has posted updated information on its Duchenne clinical development programs. For the latest on GSK2402968, including DMD 114117 and DMD 114044, visit their website by following the link below or go to ClinicalTrials.gov.
October 10, 2011 | Learn more

 

2011-10-06

Loppis på Rosenlundsvägen 6, Östra Grevie (Vellinge), , söndagen den 9/10 klockan 10 - 14, alla intäkter skänks till SMDF.

 

Varmt välkommen att fynda!
 

9/13/11: Prosensa Advances Three Exon Skipping Candidates for Duchenne into the Next Development Stage

 

2011-09-07

Update on Department of Defense Duchenne Grant

The Department of Defense Duchenne Muscular Dystrophy Research Program is now accepting grant applications for major funding opportunities in FY 2011. Learn more about grant criteria and application deadlines, and read the synopsis.
September 2, 2011 | Learn more

 

PTC Therapeutics & Genzyme Announce Restructuring of Collaboration

PTC Therapeutics, Inc. and Genzyme announced today the restructuring of their collaboration. Under the restructured agreement, PTC regains worldwide rights to ataluren and Genzyme retains an option to commercialize ataluren in indications other than nonsense mutation Duchenne/Becker outside the U.S. and Canada.
September 2, 2011 | Learn more

 

Families and Experts Gather at 2011 BMD Conference8/18/11

 

2011-09-01

Karin Handin har en systerson som i februari 2011 fick diagnosen DMD. Hon driver ett litet företag där hon syr, främst barnartiklar, som säljs via nätet.

Under september månad kommer 20% av alla intäkter skänkas till SMDF.

 

Sprid budskapet. länk

 

 

2011-08-26

 

Department of Defense Announces Funding Possibility

The Department of Defense Duchenne Muscular Dystrophy Research Program has announced a funding opportunity in FY 2011. This announcement will allow investigators time to plan and develop applications if fund should become available.
August 24, 2011 | Learn more

 

 

Santhera Obtains US Patent for Use of Catena® in the Treatment of Muscular Dystrophies

Santhera Pharmaceuticals announced today that the United States Patent and Trademark Office granted patent protection for the use of idebenone (brand name Catena®) in the treatment of Duchenne and other muscular dystrophies.
August 24, 2011 | Learn more

 

2011-08-17

 

Söndagen den 21 augusti 2011 deltar bl.a. Stefan Holm i Run For Life i Tävelsås.

Varför inte anmäla sig eller komma och heja på. Det kommer att finnas möjlighet att få Stefans autograf m.m.

För mer information klickar ni på nedanstående länk.

http://www.siggestengard.se/runforlife_info.aspx

_____________________________________

 

AVI BioPharma Initiates Dosing in Phase 2 Study of Eteplirsen

AVI BioPharma announced that it has initiated dosing in a Phase 2 study of eteplirsen, the Company's lead exon-skipping therapeutic candidate for the treatment of Duchenne. The travel costs for the patients participating in the Phase 2 clinical study are supported in part by grants from Parent Project Muscular Dystrophy and Muscular Dystrophy Association.
August 15, 2011 | Learn more

 

NINDS Guidance on Rigor and Objectivity in Preclinical Research

NINDS has developed and just released a guidance document to help improve the quality of the preclinical data that drives clinical trials. Our best chance of improving success in translation is to help ensure that we use the available tools to best advantage—that preclinical studies are conducted rigorously, data is evaluated objectively, and there is transparency in reporting of study outcomes.
August 12, 2011 | Read more (PDF)

 

2011 Connect Conference Presentations are Live

The 2011 Annual Connect Conference presentations are live and available for download. We've added audio mp3 recordings as well. Some sessions are available via Youtube.
August 8, 2011 | Learn more

 

Heart Failure Drugs Preserve Muscle in Muscular Dystrophy

Two common drugs used to treat heart failure might also improve heart and muscle function in Duchenne, according to a new study at Ohio State University. Early treatment with lisinopril and spironolactone significantly preserves heart and skeletal muscle tissue in an animal model of the disease.
August 2, 2011 | Read More

 

7/25/11: AVI BioPharma Announces Exon Skipping Results Published in The Lancet

 

7/21/11: EMA Recommends Guidelines in Duchenne/Becker

 

Hämtat från www.parentprojectmd.org

 

MDA Collaborates with AVI BioPharma on First Phase 2 Placebo-Controlled Clinical Trial of Exon-51 Skipping Drug as Potential Therapy for Duchenne Muscular Dystrophy [8/16/11]

 

DMD: Phase 2 Exon-Skipping Trial Launched [8/15/11]

 

Eteplirsen (AVI-4658) Boosts Dystrophin Production in DMD7/26/11

 

DMD: Daily and Weekly Prednisone Regimens About the Same7/20/11

 

Hämtat från www.mdausa.org

 

2011-08-02

Tisdagen den 9 augusti 2011 deltar Stefan Holm i KK Joggen i Katrineholm och söndagen den 21 augusti 2011 i Run For Life i Tävelsås.

 

Varför inte anmäla sig eller komma och heja på. Det kommer att finnas möjlighet att få Stefans autograf m.m.

 

För mer information klickar ni på nedanstående länkar

 

http://www.siggestengard.se/runforlife_info.aspx

 

http://www.kk-joggen.se

 

2011-07-01

Clinical Genetic Aspects of Duchenne and Becker

 

Research Briefs: DMD/BMD trials update

 

2011-06-10

 

Research Briefs: The DMD/BMD Affected Heart

 

2011-06-01

 

Muskelregistret

Styrelsen kan meddela att det nationella registret för neuromuskulära sjukdomar nu är i drift. Registret har skapats i syfte att underlätta samordning av insatser och forskning såväl nationellt som internationellt. Insamling av data pågår för närvarande och utförs av ansvariga läkare.

 

Observera att deltagande och inmatning i registret sker först efter det att patient eller vårdnadshavare lämnat skriftligt samtycke. Det är därför viktigt att ni stöter på er läkare om ni inte har fått någon förfrågan om deltagande. 

Symposium2012

Nästa symposium kommer att hållas på Scandic Crown den 20-21 april 2012 i Göteborg.  Boka datumen. Mer information kommer efter sommaren.

 

5/16/11 Research Briefs: BMD, DMD, EDMD, FA, LGMD, OPMD, Pompe disease, SMA

 

Hämtat från www.mdausa.org

 

2011-05-11

 

Karin Lindquist med familj anordnar loppis söndagen den 22/5-11 mellan klockan 10-15 i Blåbandslokalen i Hörsta som ligger utanför Kumla.

 

Alla intäkter tillfaller SMDF.

________________________________

 

5/4/11: Sildenafil/Taladafil Study at Cedars-Sinai Medical Center IRB-Approved

5/3/11: One Voice Summit Report Published

5/2/11: Genzyme Ataluren Update

4/29/11: PPMD Awards Over $40,000 Grant to SomaLogic Study

4/28/11: 2011 Connect Conference Agenda is Here!

4/27/11: Physiotherapy Basics

Hämtat från www.parentprojectmd.org

 

2011-04-28

 

4/25/11:Partial Clinical Hold Lifted by FDA for GSK2402968 (Exon 51 Skip)  Learn more

4/21/11: ACE-031 Study Terminated: Update From Acceleron and Shire Read Acceleron/Shire’s statement | Read the statement

4/18/11: Scientists identify gene that could hold the key to muscle repair

4/12/11: AVI BioPharma to Present Data for RNA-Based Duchenne Drug Candidate

4/12/11: GSK2402968 Clinical Development Programme Update

4/11/11: Therapeutics for Rare & Neglected Diseases Accepting Proposals

4/8/11: The April eNewsletter is Here

4/5/11: Phrixus Announces $890,000 in NIH Funding for Duchenne Program (PDF)

Hämtat från www.parentprojectmd.org

 

4/20/11: AAN Research Briefs on DM, DMD, LGMD, MG, MMD, SMA

 

Hämtat från www.mdausa.org

 

2011-04-08

 

4/4/11: PPMD Awards $750,000 Grant to Sildenafil/Taladafil Study (PDF)

3/31/11: Seeing Duchenne, Understanding Duchenne

3/30/11: Ataluren Program Update from Genzyme (PDF)

3/30/11: Idebenone as a Novel, Therapeutic Approach for Duchenne (PDF)

 

3/29/11: Research Briefs: DMD Exon Skipping

 

2011-03-27

 

3/24/11:  Results of Prosensa’s Exon-skipping Trial in Duchenne Published in New England Journal of Medicine

Prosensa, the Dutch biopharmaceutical company focusing on RNA modulating therapeutics, announces the publication of results from a phase I/II and 12-week extension study of its lead product, PRO051 (GSK2402968) for the treatment of Duchenne in the New England Journal of Medicine. | Read the press release

3/23/11: Workshop Report: Endocrine Aspects of Duchenne (PDF)

3/22/11: Download PPMD’s New Duchenne App

3/21/11: Drug screen points the way to potential new Duchenne treatments

3/16/11: Report from Genetic Diseases of Children Conference

3/16/11: GSK Now Recruiting for Exon 51 Clinical Trial in Non-Ambulatory Boys

 

 

2011-03-17

 

Inbjudan

 

till fyra dagars rekreationsvistelse på NHRs anläggning Valjeviken den 8-12 augusti 2011.

 

Mer information hittar ni här.

 

 

2011-03-16

 

3/11/11: The March eNewsletter is here Read More

 

3/10/11: Steve Wilton Publishes on Novel Compounds for Duchenne. Read More (PDF)

3/9/11: Last week, PPMD hosted a webinar regarding DELOS with an update from Santhera on this trial. Listen to the webinar and make sure to register with DuchenneConnect to stay abreast of this and other clinical trials in process.

3/7/11: AMT receives grant From Dutch parents’ organization for Duchenne Gene Therapy. Read the release.

3/4/11: If you missed PPMD President Pat Furlong on NPR’s Talk of the Nation, click here to listen to the full interview. Pat discusses the role social networking has played in rare disease.

3/3/11: Check out GBI Research's report, "Musculoskeletal Disorders Therapeutics to 2016", which provides in-depth analysis of unmet needs, drivers and barriers that impact the global musculoskeletal disorders market.

3/3/11: Listen to PPMD Pres. Pat Furlong on NPR’s Talk of the Nation, live today at 3pm eastern. Pat will be discussing the role of social media in rare disease. Visit Talk of the Nation online to download today’s show if you can’t listen live.

3/1/11: Congratulations to PPMD’s Board Chairman John Killian for winning the 2011 Cash Sweat & Tears Award from the Run Walk Ride Fundraising Council. We can’t think of a more deserving recipient and are so proud of what John continues to accomplish in the fight to end Duchenne. Read the release.

3/1/11: Elizabeth Vroom and our friends at Duchenne Parent Project in the Netherlands marked Rare Disease Day by ringing the bell at NYSE Euronext to open trading. Read more.

2/28/11: In honor of Rare Disease Day, the FDA has posted an interview with Charlie Riesebeck and his dad, Chuck. Thanks to the FDA for featuring Duchenne on this extremely important day. Watch now. (The sound is temperamental so you may need to turn it up.)

2/24/11: Pat Furlong recaps two weeks of extensive traveling and intensive meetings in her latest blog. Read more.

2/23/11: Join us March 3 at 2pm eastern for a DELOS Study update from Dr. Richard Finkel. Click here to learn more about this webinar.

2/16/11: The National Institutes of Health announce unique opportunity for clinical trainees.Click here to learn more details.

2/16/11: Sanofi-aventis to acquire Genzyme. Read the announcement.

2/15/11: Whether or not you were able to join us in Washington, DC for our 2011 Advocacy Conference now is the time to make your voice heard. You are just a few "clicks" away from sending your Senators & Representative an email message asking for their support. Please TAKE ACTION now.

2/9/11: PPMD’s February newsletter is here, featuring updates on research, including upcoming webinars, and gearing up for next week’s Advocacy Conference. Check it out.

2/8/11: PPMD marks ten years of advocacy with One Voice Advocacy Summit. Your advocacy efforts over the last decade have resulted in $192 million in Duchenne-specific federal investment. Learn more; read the release.

2/1/11: PPMD awards PTC Therapeutics $250,000 grant to advance drug discovery program to improve heart function in Duchenne & Becker. Read the release.

1/26/11: PPMD President Pat Furlong recently returned from a busy month of traveling. Find out what she’s been up to in her latest blog.

1/26/11: Congratulations! Stuart W. Peltz, Ph.D., President and CEO of PTC Therapeutics, Inc. has been elected a Fellow of the American Association for the Advancement of Science (AAAS). Read the release.

1/25/11: PPMD Board Member Heinreich Meerman (and twenty friends) to run half marathon in Houston this weekend, just after becoming a father again! Congrats and good luck! Read the feature article.

1/25/11: PPMD is adding an extra grant cycle this year for its End Duchenne Grant Award opportunity. Click here to learn more about this exciting, additional opportunity to submit your application.

1/20/11: Add your voice to ours at PPMD’s One Voice Advocacy Summit next month in Washington, D.C. This is a critical time for us to speak up in our nation’s capital, but we need you to join us. Learn more today.

Hämtat från www.parentprojectmd.org

___________________________

 

IL10 Protein May Influence DMD Severity3/9/11

 

Research Briefs: CMS, DMD, LGMD, Pompe, stem cells 2/25/11

 

Research Briefs: CMT, CMS, DMD/BMD, FA, Pompe disease, SBMA2/10/11

 

UCLA Researcher Receives MDA Grant to Develop DMD Drug2/9/11

 

Gene Variant May Indicate Severity of DMD1/11/11

 

Hämtat från www.mdausa.org

 

2011-01-21

Muskelkonferens med NHR

Välkommen till en spännande och intressant konferens där fokus kommer att ligga på muskelsjukdomar. Dagen kommer att innehålla intressanta föreläsningar kring dessa relativt sällsynta diagnoser hos både barn och vuxna.

Startar: Tisdag 22 Mars 08.30

Slutar: Tisdag 22 Mars 17.00

 

Plats: Courtyard Marriott Hotell, Stockholm

 

Målgrupp: Personer med intresse av neuromuskulära sjukdomar

 

Kostnad: 200:-


http://www.nhr.se/om-nhr/kalender/muskeldagen/
Varma hälsningar!

Anna Bärneskär NHRs diagnos ombud NMD

_ _ _ _ _ _ _ _ _ _ _ _ _ _

 

GSK and Prosensa announce start of Phase III study of investigational Duchenne medication. Read the press release.1/19/10

 

AVI to present on Thursday, January 13 at JP Morgan HealthCare Conference. Click here for more information and to view webcast.1/10/11

 

We’re so close to our goal to launch the cardiac initiative and just days from the end of the year. Make your tax-deductible donation today, have your gift doubled, and help us heal hearts in 2011! Learn more.12/29/10

 

Human protein improves muscle function of muscular dystrophy mice. Read more of Dr. Fallon’s report from a study sponsored in part by PPMD.12/28/10

 

AVI BioPharma provides update on Duchenne muscular dystrophy program. Read the release.12/28/10

 

Genzyme provides an update on ataluren. Read the report.12/23/10

 

Hämtat från www.parentprojectmd.org

 

Becker MD Study Seeks Participants1/18/11

 

Experts Gather to Focus on Heart in DMD1/18/11

 

MDA Awards $1.5 Million to Acceleron for DMD Drug Testing1/14/11

 

Nationwide Children's Podcast Explores Immunity in DMD1/13/11

 

Acceleron Awarded $1.5 Million Grant from Muscular Dystrophy Association to Support ACE-0311/6/11

 

Research Briefs: DMD, BMD, MMD, SMA12/28/10

 

DMD Progression Studied in Very Young and Nonwalkers12/27/10

 

Hämtat från www.mdausa.org

 

2010-12-22

Dr. Craig McDonald discusses the Six-Minute Walk Test as an outcome measure in Duchenne. Listen to the podcast.12/21/10

Dr. Ryszard Kole from AVI Biopharma and PPMD President Pat Furlong further reflect on recent findings that Duchenne is a stem cell disease. Read the discussion.12/20/10

PPMD Pres Pat Furlong weighs in on recent article about the new mouse model that implicates stem cells.12/15/10

AVI BioPharma names Chris Garabedian Chief Executive Officer. Read the release.12/14/10

PPMD's Scientific Director explains recent article on new mdx mouse model. Learn more.12/10/10

Hämtat från www.parentprojectmd.org

 

Parents' Perceptions Sought of DMD/BMD Ataluren Trials 12/21/10

Large-Scale Trial of Idebenone in DMD Is Now Open12/15/10

Research Briefs: DMD, BMD, CMD, SMA12/9/10

Longer Chromosome Tips Mean Better Muscle Repair in DMD mice12/9/10

 

Hämtat från www.mdausa.org

 

2010-12-08

Observational data from one-year follow-up study validate Six-Minute Walk distance as an outcome measure in Duchenne and Becker. Read the release from PTC Therapeutics.12/1/10

Myostatin exon skipping shows promise for a wide range of muscle conditions. Read more.11/2/10

Hämtat från www.parentprojectmd.org

 

2010-11-01

 

Viagra may help heart effects of Duchenne. News that this community has been following closely, has now peeked national interest. Read the story.10/19/10

GSK outlines approach to delivering advances in the treatment of rare diseases. Read the release.10/18/10

Pivotal data presented at the World Muscle Society Congress suggest Ataluren slows the loss of walking ability in patients with nonsense mutation Duchenne/Becker. Read the release.10/15/10

Kennedy Krieger Institute launches first Phase II Clinical Trial of heart disease treatment for Duchenne. Learn more.10/14/10

Acceleron presents preliminary ACE-031 results from a Phase 1 Multiple Ascending Dose Study in healthy volunteers. Read the release.10/13/10

Prosensa receives £7.5m milestone payment as part of its program with GlaxoSmithKline in Duchenne. Read the release.10/13/10

Nationwide Children’s Hospital posts podcast of This Month in Muscular Dystrophy featuring Dr. Annemieke Aartsma-Rus, speaking on “Progress in Antisense Therapies in Neuromuscular Disorders.” Click here10/07/10 to listen.

Institute of Medicine just published a consensus report on Rare Diseases and Orphan Products: Accelerating Research and Development. PPMD President Pat Furlong participated on the Committee. Check out the report brief and then read the full report.10/04/10

PPMD President Pat Furlong discusses the recent AON meeting in D.C. Read her blog.09/30/10

NIH awards Muscular Dystrophy Cooperative Research Center grants. Read the release.09/30/10

Hämtat från www.parentprojectmd.org

 

Hämtat från www.mdausa.org

 

 

2010-09-29

Karin Lindquist med familj anordnar loppis söndagen den 3/10 mellan klockan 10-15 i Blåbandslokalen i Hörsta som ligger utanför Kumla.

 

Alla intäkter tillfaller SMDF.

 

 

Research Briefs: DMD, FA, DM, PM, IBM, MG, LEMS [9/24/10]

 

2010-09-24

If everyone reading this message sent a text donation of $5 supporting Coach To Cure MD, we could raise $250,000 in a matter of minutes. Read how.09/22/10

The NINDS/FDA Antisense Oligonucleotide (AON) Therapies in Neuromuscular Disease Conference will stream live on September 27 and 28. Click here for more information, including webcast details and a full agenda.09/22/10

 

2010-09-13

Acceleron announces collaboration with Shire on novel muscle therapeutics for orphan diseases. Read more. 09/09/10

 

Hämtat från www.parentprojectmd.org

 

 

Research Briefs: ALS, BMD, DMD, MMD, SMA, Muscle Regeneration 8/20/2010

 

Hämtat från www.mdausa.org

 

 

2010-08-30

A recent article in Slate addresses the difficulties of developing new therapies, and the importance of the words that we all use in talking about therapy development efforts. Read the article.08/26/10

NIH presents new funding opportunity for investigators. Check out these grants with fall application deadlines.08/25/10

 

2010-08-23

BioMarin to Host Conference Call to Discuss Results of Phase 1 Clinical Study BMN 195 for Duchenne Muscular Dystrophy. Learn more. 08/19/10

ACE-031 receives orphan designation in the US. Read the release. 08/19/10

 

Run for life

 

Hej vänner,

Den första tävlingen är nu avslutad.

 Ca 350 vuxna och 130 barn anmälde sig. I runda slängar kommer en inbetalning på 35 000 till SMDF om 1-2 veckor.

En artikel i SMP.se blev det också och responsen före, under och efter har varit underbar.

Ha en fortsatt bra vecka.

Länk till artikeln:

http://www.smp.se/nyheter/vaxjo/run-for-sigge-succelopp-i-tavelsas(2070853).gm

 

Hälsningar

Martin Stengård

 

 

2010-08-19

Santhera obtains European patent for use of Catena/Sovrima in the treatment of muscular dystrophies. Read release.08/17/10

PPMD awards $600K to Nationwide Children’s Hospital for gene therapy study. Dr. Jerry Mendell leading follistatin gene therapy. Read more.08/09/10

Hämtat från www.parentprojectmd.org

 

MDA Awards More Than $14 Million in Research Grants [8/18/10]

 

Research Briefs: ALS, DMD, MTM and SMA8/12/2010

 

2010-08-06

Acceleron Pharma receives FDA fast track designation for ACE-031 for treatment of Duchenne. Read the release. 08/04/10

PPMD awards $20,000 grant to Prothelia. Learn more. 07/20/10

PPMD announces grants for clinical study sites. The funds will help offset travel costs for participants in Acceleron Pharma’s Phase 2 clinical study of ACE-031. Read more. 07/14/10

New peer-reviewed study concludes that Protandim improves markers of oxidative stress and fibrosis in muscular dystrophy mice. Read the release. 07/01/10

Exon Skipping and Duchenne Muscular Dystrophy Therapy: Selection of the Most Active U1 snRNA-Antisense Able to Induce Dystrophin Exon 51 Skipping Read more. 07/01/10

 

2010-06-26

 

"Run for Life"-tävling i Tävelsås, för mer information klicka här

______

 

Prosensa and GlaxoSmithKline initiate development of four additional products under existing alliance in Duchenne. Read the release. 06/23/10

A study to assess the pharmacokinetics, safety & tolerability of GSK2402968 in non-ambulant subjects with Duchenne, is now recruiting. Drug designed to induce skipping of exon 51. More info. 06/18/10

 

 

2010-06-11

PPMD awards grants to two critical, promising research initiatives in Duchenne to Dongsheng Duan and Nicholas Dobes. Read the release about these exciting projects 06/10/10.

FDA and NIH will co-sponsor a meeting titled Antisense Oligonucleotide (AON) Therapies in Neuromuscular Diseases, taking place on September 27 and 28, 2010 in Washington DC. PPMD will participate in this important meeting 06/04/10. Read more.

Costa Rica has ordered the country's largest stem cell clinic to stop offering treatment, saying there is no proof that it is effective 06/03/10. Read more.

 

 

2010-06-03

 

AVI-4658 demonstrates first ever reported generation of greater than 50% dystrophin-positive muscle fibers in a patient following systemic administration in Duchenne. Read the release.06/02/10

PPMD President Pat Furlong discusses yesterday's open conference call with PTC Therapeutics regarding the ataluren trials. Read her latest blog.05/28/10

Watch a video piece from the University of Florida about Dr. Krista Vandenborne who recently received NIH funding for Duchenne research, thanks in part to an End Duchenne Grant from PPMD.05/27/10

A new clinical trial for the investigational compound GSK2402968 (formerly PRO051) was posted to www.clinicaltrials.gov on 5/24.  This study will assess the pharmacokinetics, safety, and tolerability of the compound in non-ambulatory boys with Duchenne who have a dystrophin gene mutation amenable to an exon 51 skip. Visit DuchenneConnect for updates.05/26/10

_______________________

DMD Trial: AVI4658 Increased Dystrophin Production [6/2/10]

 

 

2010-05-20

Martin Stengård, pappa till en pojke med Duchenne, springer i helgen Göteborgsvarvet. TV4 har gjort en intervju som ni kan se nedan.

http://www.tv4play.se/nyheter/lokala_nyheter/vaxjo?videoId=1.1643926

 

Stefan Holm och Fredrik Rundqvist, se nedan, kommer även de att springa Göteborgsvarvet.

__________________________

 

Check out this important article by PPMD President Pat Furlong and Barbara Godlew, highlighting how advocacy organizations function as a direct conduit to specialized patient populations and how these groups can provide a communication channel to reach thousands of potential clinical trial participants.05/18/10

_____________________________

 

Texas Achiever with DMD Turns 50 [5/12/10]

 

DMD Research: New Funding for Imaging Studies [5/17/10]

 

2010-05-12

Styrelseledamoten Fredrik Rundqvist m fl kommer i år att springa Göteborgsvarvet. Lokaltidningen i Ystad har skrivit en artikel, läs här

__________________________________________

 

U OF ARIZONA ANIMAL SCIENCES EXPERT RECEIVES $264,000 MDA GRANT

__________________________________________

 

PPMD will host a follow up call with PTC Therapeutics regarding the ataluren trials on May 27, 2010 at 5pm eastern. For more information, click here.05/11/10

PPMD End Duchenne Grant leads to $7.5 million NIH award for University of Florida’s Krista Vandenborne, P.T., Ph.D. for her work with MRI and MRS technology. Read the release.05/07/10

PPMD's Senior Director of Research, Sharon Hesterlee, has been traveling nonstop the last week to AVI in Seattle, the BIO meeting in Chicago, and New Directions meeting in Ottawa. Read her blog about trends in biotech and the latest on exon skipping.05/07/10

 

__________________________________________

2010-05-03

Informative video about the technique of exon-skipping, how it works and how it’s being applied in clinical testing. The technology was developed, in part, by Steve Wilton, a regular presenter at PPMD’s Connect Conference.04/22/10

Responding to concern within the community regarding the potential for an immune response to exon skipping, Annemieke Aartsma and Hidde Ploegh provided their thoughts. Read more.04/20/10

Hämtat från www.parentprojectmd.org

 

U of Arizona Animal Sciences Expert Receives $264,000 MDA Grant [4/27/10]

Caution: Immune Response Seen in DMD Gene Therapy [4/21/10]

DMD/BMD: Taking a Closer Look at Ataluren04/19/2010

Luring Away Myostatin Can Boost Muscle Size04/16/2010

 

2010-04-19

Immune Response to DMD Gene Therapy Merits Caution [4/16/10]

More Good News about Exon Skipping [4/15/10]

Progress in Exon Skipping for DMD 04/15/2010

Hämtat från www.mdausa.org

 

___________________

 

Brenda Wong presented top-line results from the Phase 2b clinical trial of ataluren in patients with nonsense mutation DBMD at the American Academy of Neurology (AAN) annual meeting today. Read the summary.04/16/10

:FDA publishes update on Duchenne drug development and regulatory considerations, including findings from a study held during PPMD’s Annual Connect Conference last year.04/09/10

If you missed today’s conference call with John Crowley, listen to it online now. John was very open about his own clinical trial experiences and comments on the recent ataluren trials. This was an incredible hour with a parent who has shared a very similar journey with many of us.04/08/10

PPMD is thrilled to welcome John Crowley, CEO and President of Amicus Therapeutics, inspiration for the movie “Extraordinary Measures,” for a conference call about his own experiences with the clinical trial process on April 8 at 1pm EST. Read more.04/01/10

Family friendly version of Care Considerations available from TREAT-NMD. Download here.04/01/10

Hämtat från www.parentprojectmd.org

 

2010-04-01

Prosensa initiates clinical development of PRO044 in an open label phase I/II study. Read more. 03/30/10:

 

2010-03-26

 

Hämtat från www.mdausa.org

 

AVI BioPharma announces update on AVI-5038, its PPMO Duchenne drug candidate, to be presented April 14, 2010 at the American Academy of Neurology Annual Meeting. Read more.03/25/10:

Spanish translation of the notes from the ataluren call with PTC is now available.03/24/10:

Advocacy in Action: Jackson Laboratory receives $1.44m federal grant for Duchenne models. Learn more.03/22/10:

In response to some of your questions about the ataluren survey, PPMD has posted FAQs. And if your child took part in the ataluren trial, and you have not participated in the survey, please do so today.03/19/10:

Hämtat från www.parentprojectmd.org

 

2010-03-19

Researchers discover chemical that may protect hearts of muscular dystrophy patients. Read more. 03/18/10

If your child took part in the ataluren trial, we want to hear from you. Click here to help us gather important data.03/16/10

 

2010-02-16

Cardiomyopathy in Becker MD [2/12/10]

New Muscle Stem Cell Found in Mice [2/9/10]

DMD, BMD: Tests Start of Experimental Utrophin Drug [2/9/10]

Hämtat från www.mdausa.org

 

2010-02-09

Dr. Guenter Scheuerbrandts new report on the TREAT-NMD/NIH international conference “Bringing down the Barriers” which took place in Brussels, 17 to 19 November 2009. It is not one of his usual Duchenne research reports, but one on the problems, “the barriers”, to be overcome if new and promising therapies and treatments are to be rapidly translated into the clinic, that is, to be made available as fast as possible to the patients. And not only Duchenne dystrophy was discussed at the meeting but a number of other neuromuscular diseases also. Klicka här

 

 

TREAT-NMD’s website helps distinguish between the hype of stem cell research and the hope that this science may bring to diseases including Duchenne. (02/05/10)

 

2010-02-04

Parents: Help in an effort to reduce the time to diagnosis! Take a survey about your first concerns for your child with Duchenne. (01/26/10)

BioMarin initiates Phase 1 Clinical Study of BMN 195 for Duchenne. (01/26/10)

Important revision to Part 2 of Care Considerations. Please download this version; it should replace any previous version. Change takes place on page 185 where indicated, with correction on page 189. (01/21/10)

PBS TV Special Rare disease diagnosis through technology. Read more about this upcoming TV special. (01/20/10)

PTC Therapeutics announces additional study of ataluren in patients with advanced nonsense mutation Duchenne/Becker. (01/19/10)

Hämtat från www.parentprojectmd.org

 

2010-01-14

SMDF har uppmärksammats om förvirringen vad gäller Calcort. Information om hur ni skall gå till väga om problem uppstår finner ni här

 

BioMarin initiates Phase 1 Clinical Study of BMN 195 for Duchenne. (01/13/10)

Research could predict age of onset of heart problems in Becker muscular dystrophy. (01/13/10)

Systemic treatment with AVI-4658 demonstrates RNA exon skipping and dystrophin protein expression in Duchenne patients. (12/23/09)

 

2009-12-08

Lancet Neurology publishes CDC’s Care Considerations after three years of vetting and development. Read this critical document, that provides important information regarding the care of your son. (12/04/09), New DMD Care Guidelines

 

2009-12-02

Idag har inbjudan gått ut till symposiet 2010.

Information m.m. finns här!!

 

2009-11-26

Follistatin Genes Strengthen Muscles in Monkeys
 

What are the correlations between cognitive impairments and late deletions? A recent report published in HMG Advance Access explains. (11/20/09)

 

Latest issue of Nature Biotechnology weighs in on the business of stem cells. (11/17/09)

 

2009-10-27

Exon Skipping Drug Prevents Muscle Wasting and Maintains Muscle Function in Severely Affected, Dystrophin Deficient Mice. Read the press release and article.

 

Cure for Duchenne Lies in Paws of Man's Best Friend – Interview with Joe Kornegay (10/16/09)

 

2009-10-14

Prosensa and GlaxoSmithKline form alliance to fight Duchenne. Read the official press release. (10/13/09)

With H1N1 vaccination questions all over the news, you may be confused about what is best for your child. Dr. Brenda Wong of CCHMC weighs in. (10/13/09)

CDC releases important brochure about H1N1 and what you can do to prevent your family from getting infected (10/08/09)

 

2009-09-09

Sites Open Soon in Multinational Trial of Idebenone in DMD
Idebenone, an antioxidant and possible cellular energy booster, will be tested in some 240 boys with DMD
 

Hämtat från www.mdausa.org

 

2009-10-06

Stiftelsen har lämnat bidrag åt neuromuskulära enheten i Linköping att besöka Sprin Padua Muscle days. Här kommer en rapport, Rapport från symposiet i Padova 26-28 april 2009 – 2009 Spring Padua Muscle Days

2009-10-05

TREAT-NMD wraps up promising, successful workshop. Read the press release (10/02/09)

PPMD President Pat Furlong recounts her recent trip to London for the TREAT-NMD workshop on exon skipping. (09/29/09)

CDC and PPMD Complete Duchenne Fact Sheet (09/29/09)

TREAT-NMD Workshop re: the Development of Antisense Oligonucleotide Therapies for Duchenne. Read the conference outline and agenda. (09/25/09)

Less is more: therapeutic exon skipping for Duchenne (09/24/09)

Hämtat från www.parentprojectmd.org

 

2009-09-29

 

SÖKES! El-hockeyspelare i Göteborg med omnejd!

 

Elhockey är en sport som kommer från Danmark från början, där ingen ingen direkt styrka behövs för att utföra. En snabb lagsport där man är tre stycken i varje lag som spelar på en normalstor inne bandyplan med låga mål.

Spelarna sitter i en slags permobil som har två hjul fram och ett där bak. Denna styrs av en spak precis som på en vanlig permobil. Sitsen är gjord av trä samt en sarg som sitter runt och längst fram sitter ett klubblad som skjuter iväg bollen.

Spelet är mycket snabbt då stolarna är mycket kvicka som gör att det blir roligt.

Sporten är stor i Danmark men växer även här i Sverige. Lag finns i Stockholm, Eskilstuna, Visby, Malmö och nu även i Göteborg.

I Göteborg startades ett lag nu i höst där ca sex stycken killar och tjejer träffas och tränar i fina lokaler på Kviberg, men det behövs fler så det inte blir så sårbart om någon är sjuk.

 

Träning är på tisdagar mellan kl18-20.                  

Plats: Pjäshallen på Kviberg

Några länkar:  

http://www.ifah.se/

http://www.hjalpmedelsteknik.se/etc/pdfuploads/hockey_sport.pdf

http://www.youtube.com/watch?v=4LcZalmpTvo

Ansvarig för Göteborgs handikappsförbund: Ann-Louise Petersson, Tel: 0709-229 829

ann-louise.peterson@bredband.net

 

2009-09-23

Prosensa’s RNA based therapeutic PRO051 shows favorable results in the first systemic study in patients with Duchenne. (09/22/09)

Hämtat från www.parentprojectmd.org

 

2009-09-22

Read 5 things you can do to help prevent the spread of H1N1 virus this flu season. (09/17/09)

Acceleron Pharma’s ACE-031 Increases Lean Body Mass in Phase 1 Single Dose Clinical Trial (09/14/09)

Article shares findings of a PPMD sponsored workshop on the struggles families deal with when they receive a Duchenne diagnosis (09/11/09)

PTC Therapeutics Initiates Registration-Directed Phase 3 Trial of Ataluren in Cystic Fibrosis (09/10/09)

Hämtat från www.parentprojectmd.org

 

2009-09-09

Ystad kommun dragit igång en kampanj (för anställda) att stötta och uppmärksamma Duchenne…., läs här

Check out the latest update on Project Catalyst from PTC Therapeutics.(09/03/09)

Hämtat från www.parentprojectmd.org

 

2009-09-04

Prosensa and TREAT-NMD enter into strategic collaboration for PRO-051 clinical trial planning (9/2/2009)

Local restoration of dystrophin expression with the morpholino oligomer AVI-4658 in Duchenne muscular dystrophy: a single-blind, placebo-controlled, dose-escalation, proof-of-concept study (08/27/09)

Prosensa receives notice of allowance for key patent related to lead compound in development for Duchenne (08/17/09)

Hämtat från www.parentprojectmd.org

 

2009-08-17

Researchers identify new function for protein missing in Duchenne muscular dystrophy (08/04/09)

Guenter Scheuerbrandt interviews Treat NMD Coordinator, Professor Kate Bushby about clinical trials for exon skipping (07/22/09)

 

2009-07-16

Annemieke Aartmsa-Rus, Ph.D., explains the latest research strategies in Duchenne. (07/13/09)

Science Magazine investigates exon skipping and what is coming next in clinical trials. (07/09/09)

Dr. Jonathan Finder reports on respiratory care in Duchenne patients. (07/06/09)

Hämtat från www.parentprojectmd.org

 

2009-07-01

Guenter Scheuerbrandt intervjuar professor Kate Bushby, Drs. Judith van Deutekom and Hans Schikan från Prosensa.

 

2009-06-26

Professor Barbro Westerholms betydelsefulla insatser för äldres hälsa och välbefinnande belönas med Nordiska folkhälsopriset 2009. länk

 

Guenter Scheuerbrandt interviews Treat NMD Coordinator, Professor Kate Bushby about clinical trials for exon skipping (06/18/09)

Hämtat från www.parentprojectmd.org

 

2009-06-15

Stefan Holm debuterade i stadsloppet

Holm tyckte en mil var lagom

International Collaborative Effort for DMD (ICE) comes out with Progress report on Clinical Trials (06/12/09)

The Council of Health Ministers of the EU adopt strategy to implement national plans for rare diseases, including Duchenne. (06/11/09)

Hämtat från www.parentprojectmd.org

 

 

2009-06-12

Stefan Holm springer stadsloppet i Karlstad för SMDF

 

2009-06-10

Automated drug screening with contractile muscle tissue engineered from dystrophic myoblasts (06/05/09)

AVI BioPharma, Inc. receives additional funds to continue research in skipping Exon 50 (06/04/09)

Hämtat från www.parentprojectmd.org

 

2009-05-28

The American Society of Gene Therapy analyzes enhanced exon skipping (05/28/09)

Hämtat från www.parentprojectmd.org

 

2009-05-27

New therapy substitutes missing protein in those with muscular dystrophy.05/26/09

Dr. Jonathan Finder reports on respiratory care in Duchenne patients.05/26/09

Hämtat från www.parentprojectmd.org

 

2009-05-20

Prednisone in the Spotlight
New findings about prednisone’s usage in DMD and MG were featured at the 2009 American Academy of Neurolgy meeting, läs här

Hämtat från www.mdausa.org

Science Magazine investigates exon skipping and what is coming next in clinical trials. (05/19/09)

AVI BioPharma Announces First Quarter 2009 Financial Results and Funding to Accelerate AVI-4658. (05/14/09)

Hämtat från www.parentprojectmd.org

 

2009-05-13

Research articles discussed at the latest UPPMD meeting: Article 1, Article 2 (05/11/09)

AVI BioPharma Announces Department of Defense Funding to Accelerate Development of AVI-4658 for Duchenne Muscular Dystrophy (05/08/09)

Parent Project Muscular Dystrophy Awards Two End Duchenne Grants (05/06/09)

Ultrasound imaging now possible with a Smartphone. (05/04/09)

Hämtat från www.parentprojectmd.org

 

2009-05-04

Dr. Guenter Scheuerbrandt har skrivit en ny forskningsrapport rörande Duchenne, läs här 

 

2009-04-22

PPMD Researchers Dean Burkin, Brad Hodges of Prothelia to have latest findings published in PNAS (04/21/09)

Read a new interview with TREAT-NMD Coordinator Katie Bushby (04/16/09)

New therapeutic target discussed in Nature Reviews Drug Discovery (04/15/09)

New study on the effectiveness of cough augmentation techniques (03/23/09)

Hämtat från www.parentprojectmd.org

 

Success of Strategy in Dogs Bodes Well for Treatment of Human Muscular Dystrophy
[3/16/09]

Hämtat från www.mdausa.org

 

2009-03-17

Scientists Harness Exon-Skipping in Large Animal to Successfully Treat Duchenne Muscular Dystrophy (03/15/09)

Researchers Develop DNA "Patch" For Canine Form of Muscular Dystrophy (03/15/09)

Check out slides from first ever Asian Conference on Duchenne: Slide 1, Slide 2 (03/10/09)

Hämtat från www.parentprojectmd.org

 

2009-03-09

MDA Scientists Isolate New Type of Muscle Stem Cell (03-05-09)

Hämtat från www.mdausa.org

 

2009-02-23

AVI BioPharma Announces Treatment of First Patient in Systemic Clinical Trial of AVI-4658 for Treatment of Duchenne Muscular Dystrophy (02/20/2009)

While focusing on heart disease, researchers discover new tactic against fatal muscular dystrophy  (02/13/2009)

Hämtat från www.parentprojectmd.org

 

2009-02-03

An update on cough-assistance techniques for pediatric patients with neuromuscular disease.  (02/02/2009)

AVI BioPharma Announces Successful Clinical Trial of AVI4658 for Treatment of Duchenne Muscular Dystrophy by Exon Skipping  (01/26/2009)

PTC Progress Update for Drug Discovery Program to Identify Novel Agents to Treat Duchenne Muscular Dystrophy (DMD)  (01/14/2009)

Parent Project Muscular Dystrophy Awards First End Duchenne Grant: Brown University to Receive Grant Promoting Translational Research in Rare Muscular Disease  (01/14/2009)

Hämtat från www.parentprojectmd.org

 

 

2008-12-29

Sarcospan Protein Saves Muscle Fibers in MD, läs här

 

Blood-Vessel Narrowing May Explain Muscle Disease Fatigue, läs här

Hämtat från www.mdausa.org

 

2008-12-17

Revving Up Utrophin Helps DMD Mice, läs här

Hämtat från www.mdausa.org

 

Research Report from PPMD's Scientific Director  (12/12/2008)

Exon Skipping and the Brain  (12/11/2008)

Hämtat från www.parentprojectmd.org

 

2008-12-04

Reseberättelse av Ricky Andreis från hans besök på den engelska föräldrarorganisationen Action Duchenne symposium i London den 31 okt-2 no, läs här

 

2008-11-28

Stressed out: the skeletal muscle ryanodine receptor as a target of stress, mer info här.

Hämtat från www.mdausa.org

 

2008-11-19

GHIF har i samarbete med IFAH i Stockholm ett prova-på tillfälle för sporten el-hockey.

El-hockey är för personer med funktionshinder som använder permobil. Läs mer i bifogad inbjudan.

Vi vill med detta kolla om det finns tillräckligt med intresse i Göteborg att starta el-hockey.

Sprid gärna detta vidare!

Mer info här.

2008-11-12

Annons

Vi välkomnar flera deltagare till en informationsdag för föräldrar om muskelsjukdomar: lördagen 29 november Norrtulls habiliteringscenter centralt i Stockholm Mera info finns på www.habilitering.se under kalendarium Med vänlig hälsning

Kristina Gustafsson Bonnier

Verksamheten Ovanliga Diagnoser/Informationsenheten Handikapp & Habilitering-Stockholms läns landsting Box 17519, 118 91 Stockholm

Besöksadress: Hjalmar Cederströms gata 5 tfn 08-690 60 33, 073-9420739,fax 08-720 44 55 kristina.gustafsson-bonnier@sll.se

www.habilitering.nu/ovanligadiagnoser

 

2008-11-11

Acceleron Initiates Phase 1 Clinical Trial for ACE-031 to Treat Diseases Involving Muscle Loss  (11/10/2008)

Sarcospan, a little protein for a big problem  (11/10/2008)

Hämtat från www.parentprojectmd.org

Bodywide Gene Delivery Achieved With AAV9 [11/3/08]

Hämtat från www.mdausa.org

 

2008-10-15

Dental Issues and DMD by Elizabeth Vroom of UPPMD (10/14/2008)

 

Cell penetrating peptide- conjugated antisense oligonucleotides restore systemic muscle and cardiac dystrophin expression and function. (10/9/2008)

 

Exon Skipping, A Therapy for Duchenne Guenter Scheuerbrandt, PhD interviews Gerard Platenburg, President of Prosensa  (10/8/2008)

Hämtat från www.parentprojectmd.org

 

Utrophin Gene Transfer Aids Mice With Severe MD [10/7/08]

Hämtat från www.mdausa.org

 

 

2008-10-13

  El-hockey event i Norrtälje

 

IFAH El-hockey match med chans att prova på hur det är att fara omkring i en el-hockeystol.

Träffa Eliten av svenska Elhockeyspelare och ställa frågor om elhockey.  Filmvisning om den senaste sporten

Plats: Norrtälje Sportcentrum Gustaf Adolfs v. 53 76142 NORRTÄLJE

Tid: söndag 26 okt 12 -15

 

12.00-12.45  Match IFAH/Matadorer - Tuna Tanks

12.45-13.00 Prova på för de som vill och vågar

13.00-13.45 Match IFAH/ Valkyrior - Tuna tanks

13.45-14.30 prova på för de som vill och vågar

 

Frågor och info Olle ”Ollsson” Lundgren 

Tel: 08-777 62 29 Mobil:0731-811 269        

e-mail: intevetjag@telia.com

Viveca Meander Norrtälje habiliteringscenter 0176-779 59

www.ifah.se  Arrangör. IFAH och Norrtälje habilitering

Se även www.elhockey.se

C:\Documents and Settings\JENS\Mina dokument\taxi\film hjult 002.jpg

 

 

 

 

 

 

 

 

 

 

 

2008-10-02

PTC THERAPEUTICS announces data showing 6 Minute Walk Test consistently measures ambulatory function in patients with Duchenne Muscular Dystrophy (9/30/08)

 

Effective rescue of dystrophin improves cardiac function in dystrophin-deficient mice by a modified morpholino oligomer (9/30/08)

 

Self-renewal and expansion of single transplanted muscle stem cells (9/23/08)

Duchenne & Anesthesia: An Old Problem Revisited (9/11/08)

 

Current Treatment of Adult Duchenne (9/11/08)

Hämtat från www.parentprojectmd.org

 

2008-09-08

A Phase I/II trial of MYO-029 in Adult Subjects with Muscular Dystrophy

 

NHLBI and partners have produced a go-to guide regarding clinical studies and clinical trials in children go now...

Hämtat från www.parentprojectmd.org

 

2008-09-02

Rapport från rekreationsvistelsen på NHRs anläggning Valjeviken den 24-28 augusti 2008, läs här.

 

2008-08-27

Some important information about Glyconutrients 

 

Looking under every rock: Duchenne and traditional Chinese medicine 

 

Improvements to Morpholino’s provide sustained expression of Dystrophin 

 

The Wisdom of Children: Insight into Clinical Studies 

 

Progress Update for Drug Discovery Program to Identify Novel Treatments for DMD  

 

Disease-Specific Induced Pluripotent Stem Cells 

 

PPMD funded projects happening at the University of Pennsylvania 

 

Update on Need for Haelan/BBI Trial 

 

Hämtat från www.parentprojectmd.org

 

2008-08-02

Microarray Based Mutation Detection in the Dystrophin Gene (8/1/2008)

 

BioMarin and Summit plc Sign Worldwide Licensing Agreement for Duchenne Muscular Dystrophy Program (7/23/2008)

 

The Emotional Effects of Genetic Diseases (7/03/2008)

 

Long term administration of antisense oligonucleotides into the paraspinal muscles of mdx mice reduces kyphosis (7/01/2008)

Hämtat från www.parentprojectmd.org

 

2008-06-24

Imbalance between pSmad3 and Notch induces CDK inhibitors in old muscle stem cells 

Hämtat från www.parentprojectmd.org

 

2008-06-23

Interview with Santhera Pharmaceuticals about Phase II trial with SNT-MC17/Idebenone in Duchenne patients 

 

IRES-Mediated Translation of Utrophin A Is Enhanced by Glucocorticoid Treatment in Skeletal Muscle Cells 

 

Viagra showing promise with treating cardiac problems in Duchenne 

 

2008-06-16

Förskolan Lyckebo arrangerade en vernissage fredagen den 23 maj 2008. Barnen hade målat och ritat under ett års tid. Alla föräldrar, släktingar och vänner var sedan välkomna och man kunde köpa barnens alster. Det hade även ordnats med ett lotteri, med 400 lotter för 10 kr styck. Vinsterna var handstickade tröjor, docka med hemmasydda kläder och akvareller. Pengarna, nästan 7.000 kronor, som flöt in har satts in på SMDF:s konto. 

SMDF önskar framföra ett stort Tack till Förskolan Lyckebo för bidraget. Bilder från Lyckebo vernissage

 

Lördagen den 31 maj sprang ett stort antal kämpar, däribland styrelseledamoten Fredrik Rundqvist, Stockholm Maraton. Löparna var utrustade med reklam för både www.smdf.se och www.mansrundqvist.se. Bilder finner Du på följande länk, http://picasaweb.google.se/mansdavidrundqvist/StockholmMarathon2008 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Carl Rosenblads sida är uppdaterad efter helgens lopp i Göteborg, läs här.

 

2008-06-10

Inbjudan 

 

till fyra dagars rekreationsvistelse på NHRs anläggning Valjeviken den 24-28 augusti 2008. Ankomst under dagen den 24 och hemresa efter lunch den 28

Läs mer här

__________________________________________

2008-06-09

 

Increased treatment options for Duchenne and related muscular dystropies, läs här

Hämtat från www.parentprojectmd.org

 

2008-05-30

 

NHR-fondens rekreationsstipendium 100 000 kronor

tilldelas Muskedystrofifonden

genom dess ordförande

Barbro Westerholm

 

Varje år får ca 10 pojkar i Sverige diagnosen Duchennes muskeldystrofi. Det totala antalet personer med sjukdomen är okänt, men förekomsten beräknas till cirka 30 per miljon invånare (60 per miljon manliga invånare).

 

NHR-fonden vill idag på den första Muskeldagen som någonsin arrangeras i Sverige därför tillse att ett tjugotal personer med sjukdomen Duchennes muskeldystrofi kan komma i åtnjutande av en fyradagars rekreationsvistelse på NHRs anläggning Valjeviken utanför Sölvesborg.

 

Det sker genom att i samverkan med Muskeldystrofi-fonden, NHR och Valjeviken arrangera en sådan vistelse och till den inbjuda 20-talet personer med sjukdomen, var och en tillsammans med personlig assistent eller närstående.

 

Vistelsen kommer att bjuda på många aktiviteter såsom segling, bryggbåtsfärd, ridning, båtutflykter och mycket social samvaro. Boende med helpension ingår. 

 

Med förhoppning om att vistelsen blir en positiv upplevelse för alla deltagare.

 

Stockholm den 29 maj 2008

 

STIFTELSEN NHR-FONDEN

 

Kathleen Bengtsson Hayvard

fondstyrelsens ordförande

 

Mer info om hur man anmäler sig m.m. kommer inom kort.

________________________________________________

 

Måns ska ingå i världsomspännande studie, (läs här)

________________________________________________

Exon skipping in Duchenne muscular dystrophy, (läs här)

 

2008-05-26

Report on the Parent Project Muscular Dystrophy behavior workshop 89 of December 2006, Philadelphia, (läs här)

Hämtat från www.parentprojectmd.org

 

Viagra Shows Promise for Heart Problems In DMD, BMD, (läs här)

Hämtat från www.mdausa.org

 

2008-05-14

Kl 14.00 lördagen den 31 maj går starten för den 30:e upplagan av Stockholm Marathon. Drygt 18 200 löpare från hela världen är anmälda.

 

Bland de som skall springa är bl.a. ledamoten av SMDF:s styrelse Fredrik Rundqvist. David Wiles, en god vän till Familjen Rundqvist har dragit igång en sponsorkampanj för att försöka samla in pengar till Måns och SMDF. Om Ni har tid och befinner Er i anslutning till banan tycker jag att Ni skall heja på ovanstående gäng.

 

//Eric Jernryd

 

2008-05-09

Power Point presentationerna från symposiet är utlagda på följande länk, (Läs här)

 

PTC Therapeutics Announces Initiation of Phase 2b Registration-Directed Clinical Trial of PTC124 in Duchenne/Becker Muscular Dystrophy (Läs Här). FAQ for Phase 2b DMD-BMD PTC Trial (Läs Här)

 

Update on Research Approaches for a Therapy of Duchenne Muscular Dystrophy, (Läs här)

 

2008-04-24

PTC Therapeutics Announces Initiation of Phase 2b Registration-Directed Clinical Trial of PTC124 in Duchenne/Becker Muscular Dystrophy (läs här)

 

Hämtat från www.parentprojectmd.org

 

2008-04-18

Compressed Prednisone Schedule May Reduce Some Side Effects

Two days a week of the corticosteroid prednisone at a high dose appears to be almost as beneficial as a daily moderate dose of the drug in boys with Duchenne muscular dystrophy (DMD), and some side effects may be less severe, investigators reported today at the 60th annual meeting of the American Academy of Neurology in Chicago.

The year-long, multicenter study, supported by MDA and the National Institutes of Health, was conducted by Diana Escolar at Children’s National Medical Center in Washington, with colleagues at many institutions.

The investigators analyzed data from 64 boys with DMD who were 4 to 10 years old, had not previously taken corticosteroids, and were still walking.

The boys were randomly assigned to take prednisone at 0.75 milligrams per kilogram every day, or to take prednisone at 10 milligrams per kilogram per day two days a week. Neither the boys nor the investigators knew who was on which schedule. (Boys on the two-day prednisone schedule received “dummy” pills on the no-prednisone days.)

Effects on strength maintenance were similar in the two groups, but time required to get up from the floor was better in the daily prednisone group.

Growth retardation, a known prednisone side effect, was less severe in the two-day, high-dose prednisone group, but weight gain, another serious side effect, was the same in both groups after a year.
 

Hämtat från www.mdausa.org

______________________________________________

Carl Rosenblad kommer även i år att lämna sitt stöd till SMDF. Han kommer att placera dekaler för SMDF på sin tävlingsbil och sprida en folder med information om SMDF:s verksamhet. Mer info finner Ni på antingen Carl Rosenblad eller www.rosenblad.com samt slutlige www.stcc.se 

                       

_________________________________________________

Progress Update for Drug Discovery Program to Identify Novel Treatments for Duchenne Muscular Dystrophy  (läs här)

Hämtat från www.parentprojectmd.org

 

2008-03-31

Programmet är klart, klicka antingen här eller ladda ner  genom att högerklicka på ikonen och spara.

________________________________________________

 

Special Report on DMD-BMD Research, klicka här

Hämtat från www.mdausa.org

________________________________________________

New US Orphan Drug Director to Step Up the Pace, klicka här

 

Potential New Pharmacologic Strategy for Duchenne: Inhibition of Cyclophilin D, klicka här

 

Investigational drug tested for preventing muscle fiber death in muscular dystrophy, klicka här

 

Hämtat från www.parentprojectmd.org

 

2008-03-13

 

Dags igen för en temadag om muskelsjukdomar

Lördagen 19 april -08 kl.  9.30-16.00

Habiliteringscenter Norrtull, Norrtullsgatan 14, (Stockholm)  Norra infarten, port H (närmaste T-bana är Odenplan) För mer info klicka här

______________________________________

 

Deflazacort Use in Duchenne Muscular Dystrophy: An 8-Year Follow Up, läs här

Duchenne Community Working Together to Establish Guidelines for Optimal Care, läs här

Hämtat från www.parentprojectmd.org

 

2008-02-29

Tendons May Need Myostatin to Stay Supple, läs här.

Hämtat från www.mdausa.org

 

Outline of DMD Research Strategies, Parent Project Muscular Dystrophy has developed an outline of DMD research strategies, läs här.

Hämtat från www.parentprojectmd.org

 

2008-01-17 

Breaking News: PTC124 Phase 2b Clinical Trial Announced on ClinicalTrials.gov 

(read more)

 

2008-01-17 

Listing of Clinical Trials in Duchenne Muscular Dystrophy

(read more)

 

Hämtat från www.parentprojectmd.org

 

2007-12-31

 

Leiden University Medical Center and Prosensa B.V. Announce New England Journal of Medicine Publication of First Successful Clinical Study with RNA-based Therapeutic PRO051 in Duchenne Muscular Dystrophy, läs här

 

Restoration of Human Dystrophin Following Transplantation of Exon-Skipping-Engineered DMD Patient Stem Cells into Dystrophic Mice, läs här

 

Hämtat från www.parentprojectmd.org

 

Researcher Seeks to Stop Respiratory ‘Vicious Cycle’ in DMD, läs här

Hämtat från www.mdausa.org

 

2007-12-21

Stem Cells, Gene Correction Combined To Treat DMD Mice, läs här

Hämtat från www.mdausa.org

 

2007-11-30

Review of PPMD's 2007 Annual Conference By Guenter Scheuerbrandt

Working together to end Duchenne, läs här

 

Hämtat från www.parentprojectmd.org

 

2007-11-26

InsamlingsStiftelsen för Muskeldystrofiforskning inbjuder till ett symposium om Muskeldystrofi fredagen och lördagen den 25-26 april 2008. 

 

2007-11-20

Achieving Success in Clinical Studies By, Pat Furlong, läs här

Hämtat från www.parentprojectmd.org

2007-11-19

Dystrophin levels as low as 30% are sufficient to avoid muscular dystrophy in the human, läs här

Hämtat från www.parentprojectmd.org

2007-11-15

Duchenne Muscular Dystrophy: Focus on Pharmaceutical and Nutritional Interventions, läs här

Hämtat från www.parentprojectmd.org

___________

 

New therapies for Duchenne muscular dystrophy: challenges, prospects and clinical trials, läs här

 

Hämtat från www.parentprojectmd.org

2007-11-05

Symposium 2008. 

InsamlingsStiftelsen för Muskeldystrofiforskning inbjuder till ett symposium om Muskeldystrofi fredagen och lördagen den 25-26 april 2008. Inbjudan och mer info kommer inom kort.

 

V.v. att informera Era kollegor, anhöriga och alla andra som på något sätt berörs av Duchenne- och Beckers MuskelDystrofi om symposiet.  

 

2007-11-05

Santhera Reports Encouraging, First Data from Phase IIa Clinical Trial with SNT-MC17 in Duchenne Muscular Dystrophy, läs här

Hämtat från www.parentprojectmd.org

 

2007-10-22

MDEX Clinical Trial Offers Hope For Young Men With Duchenne Muscular Dystrophy, läs här

 

___________________________________________

 

PTC Therapeutics Announces Additional Results From Phase 2 Study of PTC124 In Duchenne Muscular Dystrophy, läs här

 

2007-10-11

PTC Therapeutics Announces Pharmacokinetic and Safety Results from Phase 2 Study of PTC124 in Duchenne Muscular Dystrophy, läs här

 

2007-09-14

Inbjudan till öppet hus, läs här

 

2007-09-11

6th International Round Table, Monaco, June 23rd, 2007

Clinical trials in Duchenne muscular dystrophy: from phase 1 trials to therapeutic benefits, (read more) eller klicka här

 

2007-07-11

PTC THERAPEUTICS ANNOUNCES $15.4 MILLION NIH RESEARCH GRANT FOR DUCHENNE MUSCULAR DYSTROPHY

Grant Extends Research Originally Supported by Parent Project Muscular Dystrophy (read more)

 

2007-06-01

 

 

Måndagen den 28 maj 2007 höll styrelsen för Stiftelsen för MuskelDystrofiForskning (SMDF) sammanträde i Falköping.

Inför sammanträdet hade grundarna av stiftelsen Christina och Elwyn Mandley samt Jarl Mared meddelat att de inte ville sitta kvar i styrelsen utan önskade att nya krafter skulle komma in.

 

Till ny styrelse valdes

Ordförande Prof. Barbro Westerholm

Doc. Thomas Sejersen

Doc. Már Tulinius

Leg. Sjukgymnast Anna-Karin Kroksmark

Ulrik Härensten, föräldrarrepresentant

Sara Härensten, föräldrarrepresentant

Eric Jernryd, föräldrarrepresentant 

Ulf Seger, föräldrarrepresentant

 

Det ovärderliga arbete som Christina och Elwyn Mandley samt Jarl Mared har utfört för stiftelsen för MuskelDystrofiForskning ställer krav på och ger utmaningar för den nya styrelsen. Krav och utmaningar som vi i den nya styrelsen kommer att försöka möta i deras anda.

 

Ett stort TACK till Christina och Elwyn Mandley samt Jarl Mared för deras insatser under årens lopp för stiftelsen MuskelDystrofiForskning.

 

På den nya styrelsens vägnar

 

Barbro Westerholm

 

 

2007-05-31

THE FIRST PART OF THIS MESSAGE IS IN SWEDISH, AN ENGLIGH VERSION FOLLOWS BELOW.

Hej!

Nu på lördag 2 juni är det dags att marschera igen!

För femte året i rad sker Marschen för tillgänglighet i Stockholm och för första gången i Göteborg, Helsingborg och Askersund. Vi hoppas att du vill delta på någon av orterna med vänner och familj för att kräva en lagstiftning som klassar otillgänglighet som diskriminering av personer med funktionshinder.

I Stockholm uppträder Jesper Odelberg på samlingsplatsen i Obersvatorielunden (Sveavägen 67) kl 13.20.

För mer information om samlingsplatser, tider, etc se http://www.marschen.se/2007

-------------

NAMNINSAMLING

-------------

Just nu är du en av ca 6500 personer som har skrivit på namninsamlingen. Tack för din påskrift! Fortsätt gärna att tipsa vänner och bekanta om att skriva på vår namninsamling på http://www.marschen.se/tipsa

(OBS! Du behöver inte skriva på namninsamlingen igen. En gång räcker.)

-----------------------

ANMÄL OTILLGÄNGLIGHETEN

-----------------------

Ju fler vi blir som anmäler den diskriminerande otillgänglighet som finns i Sverige till Handikappombudsmannen och kommunala byggnadsnämnder, desto snabbare får vi en lagstiftning. Med Independent Living Institute:s elektroniska anmälningstjänst kan alla ta del av den otillgänglighet du anmäler.

Börja anmäl idag på http://www.independentliving.org/ho/

-----------------------------

DELTA I MASSANMÄLNINGSKAMPANJ

-----------------------------

För två år sedan genomförde Marschen för tillgänglighet en massanmälningsaktion mot diskriminerande otillgänglighet. Den 18 augusti 2007 genomför vi en andra massanmälningsaktion. Detta för att öka trycket för att införa lagstiftningen och nå ut i media. Vi har redan deltagare på ett flertal platser. Vill du, din förening eller ditt företag delta? Maila Hans Filipsson på hans@marschen.se med \"Massanmälningsaktion\" i ärenderaden .

Mer information om aktionen kommer att presenteras på vår webbplats efter demonstrationerna.

Om du vill friska upp minnet kring den första massanmälningsaktionen, gå in på http://www.marschen.se/massanmalningar

Hälsningar

Marschen för tillgänglighet

---------------------------

NOTE: If you are not a resident of or visiting Sweden, the section \"PETITION\" is probably of most value to you.

Hej!

This Saturday, June 2nd, it\'s time to march again!

For the fifth year in a row The March for Accessibility will be held in Stockholm and for the first time in Gothenburg, Helsingborg and Askersund. We hope you want to participate at one of our locations with friends and family to demand a law that will classify inaccessibility as discrimination of people with disabilities.

For information on gathering places, times, etc, write info@marschen.se

Read more about The March for Accessibility at http://www.marschen.se/english

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PETITION

--------

Right now, you are one of about 6500 persons who have signed our petition. Thank you! Please continue recommending people you know to sign at http://www.marschen.se/tip

(NOTE: You don\'t have to sign the petition again. Once is enough.)

-------------------------------------

FILE COMPLAINTS ABOUT INACCESSIBILITY

-------------------------------------

The more who file complaints about the discriminating inaccessibility in Sweden to The Swedish Disability Ombudsman (Handikappombudsmannen) and municipal authorities, the faster we\'ll get a law enacted. With Independent Living Insitutes electronic complaint service, everyone can access the complaints you file. The service has not yet been translated into English. If you don\'t know Swedish and want to file a complaint, please call Hans Filipsson at 018-510 999 or mail hans@marschen.se and you will be aided.

If you know Swedish, start filing complaints today at www.independentliving.org/ho/

----------------------------------------

PARTICIPATE IN MASS FILING OF COMPLAINTS

----------------------------------------

Two years ago, The March for Accessibility held mass filings of complaints of discriminating inaccessibility to the Swedish Disability Ombudsman and municipal authorities. The 18th of August 2007, we will hold a second mass filing of complaints to raise pressure to enact the law and get media\'s attention. We already have participants at several locations. Do you, your organisation or company want to participate? Please e-mail Hans Filipsson at hans@marschen.se with \"Mass filings\" in the subject line.

More information of this event will be presented on our webpage after the demonstrations.

If you want information on the first mass filings, write Hans at the e-mail address above.

Best wishes

The March for Accessibility (Marschen för tillgänglighet)

 

2007-05-29

Boka 25-26 april 2008.

 

Stiftelsen för Muskeldystrofiforskning inbjuder till ett symposium om Muskeldystrofi fredagen och lördagen den 25-26 april 2008. Bland talarna finner vi bl.a. Katie Bushby, Dominic Wells och Eric Hoffman.

 

Mer info kommer så snart programmet är klart.

 

2007-05-14

Progress Reports, Trial Results
Presented at Conference

More than 40 speakers and some 150 registrants convened in Ottawa, Ontario, Canada, May 3-5 to celebrate the 20th anniversary of the identification of dystrophin, the protein that’s missing in boys with Duchenne muscular dystrophy (DMD) and deficient or abnormal in those with the milder variant Becker muscular dystrophy (BMD).

Läs mer här

 

2007-04-17

Följande text har Stiftelsen erhållit.

Dear Friends and Colleagues:

During the last months, many e-mails from all over the world reached me, especially from families with Duchenne boys, in which questions were asked mainly about research for a therapy of Duchenne muscular dystrophy. As it was impossible for me to answer all questions individually, I have written a general question-and-answers text, which I enclose here as pdf file.

I am sending this new text not only to those who have sent me the questions, but to all families and patients whose addresses are on my English e-mailing list, because my answers will probably interest all Duchenne families. And many researchers and clinical experts are getting my text also, whom I kindly ask for a comment and to suggest any changes or additions where they are necessary.

Läs dokumentet

 

2007-04-17

Racerföraren Carl Rosenblad kommer i helgen göra ett inhopp och köra premiären i STCC

På bilen kommer det finnas en dekal med följande lydelse " WWW.SMDF.SE   MUSKELDYSTROFIFORSKNING"

 

Sammandrag från tävlingen sänds programmet RACE, SVT 2, måndagen den 23 april 2007, klockan 22.30-23.00

 

Läs mer här

 

2007-04-17

Rapport från möte arrangerat av CINRG (Cooperative International Neuromuscular Research Group) i Washington.

Läs mer här

 

2007-03-23

Inbjudan

 

Doktorn kunde inte riktigt laga mig

Barn om sjukdom och funktionshinder och om hur vi kan hjälpa

 

Onsdag 18 april 2007 kl 16 :00 -17:30

Immanuelskyrkan, Tulesalen Kungstensgatan 17, Stockholm

 

Boken handlar om små barn. Barn som har olika sjukdomar eller funktionshinder. Vad betyder det för ett litet barn att inte kunna gå och springa, att inte kunna se, att ha svårt att tänka snabbt, att vara annorlunda? Vad betyder det att behöva ta sprutor, att vara med om behandlingar och operationer och ibland också ha ont?

Och vad kan vi göra för att hjälpa? I boken finns konkreta råd, handfast hjälp och många arbetssätt. Du får möta Elin, Felix, Jacob, Johannes och andra barn och lyssna till deras berättelser och vad som har hjälpt dem. Och några av barnen finns med oss i vimlet på lanseringen.

 

Författaren Christina Renlund, leg.psykolog och psyko-terapeut, presenterar sin bok. Hon tar oss med in i barnens berättelser, visar bilder och teckningar och sitt sätt att arbeta.

 

Varmt välkommen till barn, föräldrar/anhöriga, professionella !

Anmälan senast 16 april till Kristina Gustafsson Bonnier,

tfn 08-690 60 33, fax 08-720 44 55, kristina.gustafsson-bonnier@sll.se

På lanseringen kan du köpa boken till rabatterat pris. Du kan också beställa boken på www.gothiaforlag.se

Läs mer här    Läs mer här

 

2007-02-27

Dr. Guenter Scheuerbrandt redogör för vad som diskuterades i samband med 

4th International Conference in London, 21 and 22 October 2006.  Klicka här!