Category Archives: Muscular Dystrophy Treatment

TUCSON (AP) The Muscular Dystrophy Associations nationally broadcast 48th annual telethon and related fundraising efforts have raised about a million dollars more than last year with $59.6 million in contributions over the Labor Day weekend. The two-hour MDA Show of Strength aired Sunday on ABC. MDA President and CEO Steven M. Derks says the money raised will go toward treatment of muscular dystrophy and related diseases, and funding of research to find a cure. A release from the association said the total amount raised came from pledges during the show and through midnight Monday, as well as money raised by MDA sponsors. Celebrities such as American Idol host Ryan Seacrest and Brady Bunch mom Florence Henderson were part of the shows lineup this year, along with the Backstreet Boys, singer Paula Abdul and other entertainers. The telethon was the third since comedian Jerry Lewiss 45-year role as host ended. Kelli Park, a spokeswoman for the Tucson-based MDA, says the 2012 telethon raised $58.7 million last year. Read the rest here: Post-Jerry Lewis MDA fundraiser pulls in $59.6 million … Continue reading →

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NEWPORT BEACH, Calif.--(BUSINESS WIRE)-- CureDuchenne, a national nonprofit organization that raises awareness and funds research for Duchenne muscular dystrophy, announced today that Fergie, the eight-time Grammy award-winning singer/songwriter, is appearing in a new public service announcement (PSA) campaign on behalf of the organization. The PSA is part of CureDuchennes efforts to raise awareness of Duchenne, the most common and lethal form of muscular dystrophy, and raise funds to develop a robust pipeline of therapies that target the disease from every angle. Currently there is no treatment for Duchenne. Boys with Duchenne are usually diagnosed before the age of five and are in a wheelchair by age 12; most dont survive their mid-20s. Best known as the female vocalist for the hip hop group The Black Eyed Peas, Fergie and her husband, actor Josh Duhamel, became new parents on August 29 when their son Axl Jack was born. CureDuchenne is thrilled to launch this PSA with the support of a talented and respected artist such as Fergie, said Debra Miller, CEO and Founder, CureDuchenne. Real progress toward a cure is being made, but we urgently need the publics continued support to help us accelerate the discovery and development of possible new … Continue reading →

2 September 2013 Last updated at 19:57 ET By Branwen Jeffreys Health correspondent, BBC News A group of MPs is calling for a ring-fenced fund to pay for drugs for rare conditions. The Parliamentary Group for Muscular Dystrophy says it is concerned about funding for high-cost drugs. It comes after the special budget for treating rare diseases in England was merged into the overall NHS budget. Scotland has a fund in place for the so called "orphan drugs" until April 2014. A UK-wide strategy for rare diseases will be published this year. Overall it is estimated that 3.5 million people in the UK suffer from a rare disease, and that 70,000 of those have some form of the different muscle-wasting diseases known as muscular dystrophy. We've got families setting great store by the treatments coming through. It would be heartbreaking and devastating if they're not available to children who need them The MPs say they are concerned that funds previously ear-marked for drugs for rare diseases have now been merged into the budget for all specialised services in England. Decisions on how to spend a 100m fund for rare diseases, sometimes called orphan conditions, were made on the advice of … Continue reading →

Thats the opinion of the Muscular Dystrophy Association of New Zealand and its Chief Executive, Chris Higgins, in relation to the current decision criteria used by PHARMAC when considering funding for treatments. Including those potentially lifesaving treatments for rare conditions such as Muscular Dystrophy and other neuromuscular conditions. While most peoples pharmaceutical needs are met well by PHARMAC, there is a significant group of children and adults with rare disorders whose needs are not met by current decision criteria. PHARMAC dont fully take into consideration the impact of the patients health on their individual families, society and the economy, or the impact a treatment or medication may have on these. Currently it is based on the benefit to the individual only and then one of cost. This narrow view is one that will always disadvantage those with rare disorders. This becomes an even more pressing issue, as there are a number of treatments being developed that will be shown to be safe and effective in mitigating symptoms of these severe and debilitating conditions. "It would be devastating if people were denied access to these treatments just because theyre expensive" says MDA CEO, Chris Higgins. "That simply isnt a fair outcome", … Continue reading →

As they do every Labor Day weekend, the Taunton Fire Department and its team of volunteers are holding out their boots for help in the fight against muscular dystrophy. With a total of 100 firefighters and volunteers, the Taunton Fire Department and its supporters are asking for donations from motorists and other passersby coming through downtown Taunton. The group was around the Taunton Green throughout Sunday morning, holding out firefighter boots to collect donations. The volunteers will be out again from 8 a.m. until 4 p.m. today, organizers said. All the proceeds go toward the Muscular Dystrophy Association, which is famous for its long-running nationwide telethons that were once hosted by Jerry Lewis. Its an exciting time for MDA, said Paul Allison, a Taunton firefighter who helps organize the Taunton effort. They are making a lot of inroads now with all the gene therapy. Its just leaps and bounds. But it costs so much money for scientists to work on this and isolate these things. Allison said that every little bit helps in the fundraising effort, as research into the disease is expensive and complex, especially because the umbrella of muscular dystrophy covers 43 different muscle diseases. We have people … Continue reading →

College Station, TX- Fire fighters will be out on the streets of College Station asking motorists to help Fill the Boot for the Muscular Dystrophy Association on Friday August 30th, Saturday August 31st & Sunday Sept 1st. Every dollar that passing motorists can pitch into the fire fighters boots helps the College Station Fire Department and the College Station Professional Fire Fighters Association provide medical treatment and support services to individuals and their families living with neuromuscular diseases in the greater College Station area. Make a difference to Muscular Dystrophy families by making a donation! Please visit your local fire fighters on the corners of Texas @ Southwest parkway, George Bush @ Texas Ave, Harvey Rd @ Hwy 6 Feeder, WD Fitch @ Hwy 6 Feeder, Rock Prairie @ Longmire Dr. and GlenHaven @ University. Fire fighters will be filling the boot between 9 am to 12 pm and 4 pm to 7 pm. Fire fighters are American heroes who make such a difference for the people and families we serve, said MDA Executive Director Vienda Velasquez. The funds they raise are used for health care services and equipment support, and to help send kids to free MDA summer camps. … Continue reading →

Muscular Dystrophy Australia is sending a personal letter to AFL CEO Andrew Demetriou to urge him to make a donation to Muscular Dystrophy Australia from the $2 million fine lodged against Essendon Football Club for the misuse of banned substances, some of which were associated with Muscular Dystrophy. We are writing to the AFLs Chief Executive Officer, Andrew Demetriou, to implore him to make a donation to Muscular Dystrophy Australia to support vital care and research needed for the community which has been dragged into this ordeal, said Muscular Dystrophy Australia Executive Director, Boris M Struk. An identical letter is also being sent to AFL Chairman Mike Fitzpatrick. We hope that the AFL Board takes our request seriously and realises that there can be a great deal of good that can be achieved in light of recent events, said Mr Struk. Muscular Dystrophy is a term used for more than 60 neuromuscular disorders and it is defined as a progressive muscle destroying disorder which wastes all muscles away causing immobility, respiratory problems and cardiac complications. This is a condition which affects 1 in 1,000 Australians and 82 per cent of children aged 0-14 years with MD are boys. Football is … Continue reading →

SOUTH PLAINFIELD, N.J., Aug.26, 2013 /PRNewswire/ --Data published in the medical journal Muscle & Nerve demonstrate the clinical meaningfulness of the 6-minute walk test (6MWT) as a primary endpoint to measure disease progression and walking ability in ambulatory Duchenne muscular dystrophy (DMD) trials. The research also showed that a range of 20 to 30 meters in walking ability is a clinically meaningful change, as measured by 6-minute walk distance (6MWD). This analysis is based on natural history data obtained from PTC Therapeutics' Phase 2b trial of ataluren in 174 patients with nonsense mutation Duchenne muscular dystrophy (nmDMD), the first placebo-controlled, multi-national study of a new chemical entity for DMD. (Logo:http://photos.prnewswire.com/prnh/20010919/PTCLOGO) "Given that several novel approaches to the treatment of Duchenne muscular dystrophy have shown promise in preclinical and/or proof-of-concept clinical studies, the research community has faced the need to identify and develop clinically meaningful outcome measures for use in pivotal therapeutic trials. In boys with DMD, walking abnormalities are a major disease manifestation that have great importance to patients and their families," stated Dr. Craig McDonald, one of the world's leading experts in muscular dystrophy clinical endpoints and DMD natural history studies and lead author of the two publications. "We … Continue reading →

This weekend, firefighters from around the area will be completing their annual boot drive to help raise money for those suffering from muscular dystrophy. Last year, Leeds and Grenville firefighters raised more than $30,000 for the cause. Jordyn Deveau-Yurich, a soon-to-be Grade 6 student from Lombardy, was born with muscular dystrophy. Despite her obstacles, Jordyn is always in good spirits and doesn't let her disability hold her back, says her mother, Daphne Deveau. In this week's Q & A, Daphne Deveau explains more about muscular dystrophy and how her family benefits from the funding raised over the weekend. Q: How old was Jordyn when she was diagnosed with muscular dystrophy? A: We knew at about a month old that there was something. We knew that she had some form of muscular dystrophy probably at about five months old, after several tests. Then, the type that she had wasn't (known) until after she was one, because it's extremely rare. Q: What type does she have? A: It's a congenital muscular dystrophy and it's called Merosin deficiency type. Q: How is that different from other types of muscular dystrophy? A: Well, there are so many different kinds of muscular dystrophy, so they're … Continue reading →