Category Archives: Muscular Dystrophy Treatment

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 →

Again this year, Englewood firefighters will be staffing four locations for the annual Fill the Boot campaign, collecting donations for the Muscular Dystrophy Association. Englewood firefighters will be at the King Soopers store at Floyd Avenue and Broadway, the King Soopers at Federal Boulevard and Belleview Avenue, the Englewood Walmart and the Englewood Light Rail Station on Aug. 31, Sept. 1 and Sept 2. The money we collect helps International Association of Firefighters Local 1736 members here provide medical treatment and support services to about 10 Englewood-area residents and their families who are dealing with some form of neuromuscular disease, said Dan Alley, Englewood firefighter. The money we collect goes to the local MDA to help people in our community and around Colorado. The International Association of Firefighters has been a fundraising partner with MDA for more than 50 years. Some of the money from the Fill the Boot project goes to assist many of the more than 300 MDA-supported worldwide research projects seeking cures and better treatment for those suffering from more than 40 neuromuscular diseases. Firefighters around the metro area have supported the Fill the Boot project but, for several years, Englewood didnt take part in the fundraiser. … Continue reading →

Connor Olsen, four, with mum and dad Georgina and Wayne, from Westgate. He was diagnosed with a rare muscular wasting disease Duchenne muscular dystrophy in March 2013 and his family and the Thanet community are rallying to support the Caring For Connor Campaign towards the best possible treatment for him by Mary Louis mlouis@thekmgroup.co.uk Little Connor Olsen is an active lad who loves cars. He is earnest and chatty with twinkly blue eyes. His favourite pastimes include running and swingball. He has no idea about the rare muscle wasting disease attacking his body. Nor has Connor, just four, from Westgate, so far been noticeably affected by his Duchenne Muscular Dystrophy, only diagnosed in March. He has a tendency to fall down rather too often, tires easily and finds stairs a challenge. The terrible statistical prognosis is that he will be in a wheelchair by the age of 10 and dead by 20. The goal is to give Connor the best possible chance through a fighting fund for the latest treatment. Go here to read the rest: Campaign launched to help brave Connor … Continue reading →

ORLAND PARK, Ill., Aug. 22, 2013 /PRNewswire/ --The CITGO Petroleum Corporation Lemont Refinery teamed up with the Muscular Dystrophy Association (MDA) for the 17th Annual CITGO MDA Driving for a Cure Golf Scramble. On July 30, 2013, 360 CITGO employees, contractors, and sponsors hit the tees at Silver Lake Country Club and Crystal Tree Country Club in Orland Park. The tournament raised more than $270,000 to benefit the MDA and its muscular dystrophy advocacy, awareness, research, and support services for families in Illinois. (Photo: http://photos.prnewswire.com/prnh/20130822/PH67778) "I've had the honor of working on the CITGO MDA golf event for 17 years and I am always impressed by the overwhelming generosity of all of our partners who continue to make it a success," said David Bors, Project Engineering Manager at the CITGO Lemont Refinery and Chairman of the event. "We can always count on them, regardless of economic conditions. The strength of their support is evident as we continue to set fundraising records almost every year. In working with the MDA, we know that we are helping a first class nonprofit organization that is focused on supporting people and families afflicted with neuromuscular diseases, along with sponsoring research seeking the causes and … Continue reading →

Ignore the bickering between shareholders of Sarepta Therapeutics (NASDAQ: SRPT) and GlaxoSmithKline (NYSE: GSK) /Prosensa (NASDAQ: RNA) for a moment, because these are exciting times for the roughly 1 in 4,000 newborns worldwide who are born with Duchenne muscular dystrophy. There are two drugmakers currently knocking on the doorstep of the Food and Drug Administration, each with a unique drug -- eteplirsen for Sarepta, and drisapersen for Glaxo/Prosensa -- that has the ability to slow or stop the muscle-destroying effects of DMD. With very few treatment options currently available to DMD patients, and an average lifespan of just 25 years, this is very encouraging news. Until recently, the data on the two drugs was similarly positive, but the edge in recent weeks had been sliding back into drisapersen's favor. This big concern that has plagued Sarepta shareholders recently is that the FDA has had a difficult time accepting increased dystrophin production as a primary endpoint to improved results in DMD patients. It also hasn't helped Sarepta's case that its study is only mid-stage in nature and based on just 12 patients. This was the primary reason the FDA refused to accept an accelerated new drug application filing from Sarepta. But, … Continue reading →

18 Aug 2013 17:22 Bournville five-year-old Abbi Bennett suffers from the rare, muscle-wasting condition Ullrich Congenital Muscular Dystrophy Former Villa and Blues players rallied together this weekend to help a little Birmingham girl so fragile that even a gust of wind could blow her over. Bournville five-year-old Abbi Bennett suffers from the rare, muscle-wasting condition Ullrich Congenital Muscular Dystrophy. Her family have launched a fund-raising drive to help finance a 250,000 research project to find a cure for the illness. The project will include a trial of a drug which may help sufferers like Abbi. Dad Gary, 33, organised Sunday's (August 18) match featuring ex-Villa and Blues players at Redditch Uniteds ground in a bid to raise more cash. Charity football game held at Redditch United's ground in aid of Muscular Dystropy/Abbi Bennett Dad-of-four Gary said: "Because this condition is so rare, money for research is limited and although it is being part-funded by the Muscular Dystrophy Campaign we need to help find the rest of the cash. This research is a very big deal for us. Continue reading here: Ex Villa and Blues players play in charity match for fragile Birmingham girl Abi Bennett … Continue reading →

Posted: Friday, August 16, 2013 1:49 pm Red Wing firefighters seek donations to battle neuromuscular diseases Post-Bulletin staff, Post-Bulletin staff Post-Bulletin Company, LLC RED WING Red Wing firefighters will be out asking motorists to help "Fill the Boot" for the Muscular Dystrophy Association on from 3 p.m. to 6 p.m. Aug. 27-29. Every dollar that passing motorists can pitch into the firefighters' boots helps Red Wing firefighters provide medical treatment and support services to individuals and their families living with neuromuscular diseases. An online service is needed to view this article in its entirety. You need an online service to view this article in its entirety. Need an account? Create one now. kAm%96 x?E6C?2E:@?2= pDD@4:2E:@? @7 u:C6 u:89E6CD 92D 366? 2 ?2E:@?2= |sp A2CE?6C 7@C >@C6 E92? d_ J62CD 2?5 C6>2:?D 4@>>:EE65 E@ E96 7:89E E@ 6?5 ?6FC@>FD4F=2C 5:D62D6D]k^Am kAmu:== E96 q@@E 7F?5D 2=D@ 2C6 FD65 E@ DFAA@CE D@>6 @7 E96 ad_ H@C=5H:56 C6D62C49 AC@;64ED D666?ED 2?5 4FC6D 7@C E96 >@C6 E92? c_ ?6FC@>FD4F=2C 5:D62D6D 4@G6C65 3J |sp[ :?4=F5:?8 sF496??6 >FD4F=2C 5JDEC@A9J[ DA:?2= >FD4F=2C 2EC@A9J 2?5 p{$]k^Am kAmk^Am Thank you for reading 7 free articles on our site. You can come back at the end of your 30-day period for … Continue reading →

August 15, 2013 Fill the Boot campaign to help MDA Anonymous The Clinton Herald The Clinton Herald Thu Aug 15, 2013, 10:00 AM CDT CLINTON Firefighters soon will be out in Clinton and Camanche asking motorists to help Fill the Boot for the Muscular Dystrophy Association. Firefighters will be out on the streets of Camanche on Wednesday, Aug. 21.Clintons firefighters will collect Friday, Aug. 23. Every dollar that passing motorists can pitch into the firefighters boots helps local firefighters provide medical treatment and support services to individuals and their families living with neuromuscular diseases in that area. Firefighters have been an MDA partner for more than 50 years and remain committed to the fight to end neuromuscular diseases. Fill the Boot is the largest single fundraising program for MDA of Eastern Iowa/Western Illinois. Firefighters are American heroes who make such a difference for the people and families we serve, said MDA Fundraising Coordinator Brette Dowson. The funds they raise are used for health care services, medical equipment, support groups, and to help send kids to MDA summer camp. We are grateful for everything they do. Fill the Boot funds also are used to support some of the 250 worldwide research … Continue reading →

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Home Mail News Sports Finance Weather Games Groups Answers Flickr More omg! Shine Movies Music TV Health Shopping Travel Autos Homes Yahoo! News Search News Search Web Sign In Mail Help Account Info Help Suggestions Yahoo! Home Video Photos GMA Year in Review Odd Comics Travel Opinion Trending Now Who Knew? Weather The Upbeat U.S. U.S. Video GMA Education Religion Crimes and Trials Local Contributor Network Year In Review World World Video Middle East Europe Latin America Africa Asia Canada Australia/Antarctica Business Video Exclusives Today's Markets Stocks Personal Finance Marketplace Entertainment Video Clinton Concert Celebrity TV Movies Music Fashion Books Arts Theater Dear Abby Comics Odd News Sports Video NFL MLB NBA NCAAF NCAAB Soccer Cycling NHL Tennis Golf Boxing Motor Sports MMA Olympics Tech Gadgets Wireless Apple Social Media Security Open Source Gaming Apps This Could Be Big Upgrade Your Life Politics Remake America The Issues Women and Politics Press Releases Video Science Science Video Weather News Space / Astronomy Pets Dinosaurs / Fossils Biotech Energy Green Health Video Weight Loss Cancer Sexual Health Medications/Drugs Parenting/Kids Seniors/Aging Diseases/Conditions Blogs The Sideshow Katie's Take Power Players This Could Be Big Newsmakers Trending Now The Upbeat Who Knew? Nightline Fix Beyond … Continue reading →