Are you still working on a cure for Beckers mucular dystrophy? I have a child that wants to play football, can he play?

Who will be chosen for the experiment? How does a person volunteer for this if they have FA.? Thank you.

How can we get my son added for consideration on the drug for FA, he has a beautiful family that desperately needs him?

I have trouble understanding the jargon. I have Myotonic Muscular Dystrophy. Does this mutant gene suggest a treatment for people with Myotonic Dystrophy?

Just wanted to take a moment and thank the MDA for all its efforts in fighting DMD and other neuromuscular disorders! I thank everyone from Jerry Lewis on to all involved--you've given us hope. I have two boys w/ DMD, they have benefited from the MDA exponentially! From Clinics to equipment, to their fave: Summer Camp! My sons are William and Vernon McCorkle. Sadly we just lost William who was within a week or so of being 20. He died in his sleep peacefully and we had no idea anything was worsening, he checked out pretty good at the last clinic....But in my address at his funeral I mentioned MDA and thanked them. We are in Charlotte, NC. We really had hope since last clinic 6 months ago w/ new discoveries, even if William didn't make it, we had hope and that meant alot to my entire family. Again thank you for all you do, and lets find that cure ASAP!--for my son Vernon, who is 19 and many/all other boys and families with this disease!

Pertaining to "The Last Great Thing Retiring Your Service Dog" by Jan Blaustone in Fall 2009 issue. We recently lost a black labrador retriever to old age who was not a trained service dog but who was a great companion dog. My husband is in a wheelchair due to FSH muscular dystrophy and we would like to get another black labrador - perhaps a trained older puppy. Could you provide some guidance and names of where to obtain one.

I need it NOW. i'm 55 y/o and was dx'd 2008. I am a Child Abuse physician that needs to get back to work! My symptoms just appeared in 5/09, and I can barely get up 4 steps! Do you know how hard it is to find pediatricians willing to become experts in this area? I will gladly volunteer for any trial with any thing. After being very active , exercising religiously for 29 years and suddenly my thigh muscles don't work - the shock and depression are overwhelming. Working out with a trainer for the first time ever, and getting nowhere with my thigh muscles! Please rush to clinical trials!

Interesting article. Any studies being conducted in the reverse, i.e. for LEM where the immune system attacks the signals to the muscles?

Thanks so much for the article and the necessary forms to enroll in the FSH MD Registry!! Finally, there is some hope for the future. Probably not for me as I am nearly 57 yrs. old, but if I can help someone by registering, it would be a significant accomplishment for me.

My grandson was very disappointed this year because he wasn't able to go to camp. They didn't learn of this until 3 weeks before he would normally have gone. This would have been his 3rd year going to the Pine Tree Camp in Maine. Although it was probably a good decision I wish they had been forwarned so he wouldn't have been so sad about missing out.

I watched and supported Jerry's Kids as i was growing up.....it was speculated that the disease i have was a form of md...seeing it now under mda makes it a reality more so for me....i have what they name dermatomyositis...God bless Jerry and all the volunteers for MD ...

I have Kennedy's Disease with a CAG repeat of 61 and I am 53 years old. While I feel like I'm going downhill at least this gives me hope that in the future there might be a cure and that's worth reading about! Thank you.

Do you really want the government involved? They just get in the way. People help people, it has been proven over and over. Thank you.

I would love to see Palliative Care in Chicago, and Indiana hospitals and clinics. Family members and medical staff do not understand sometimes that you never know if your child will live long or pass away. Muscular diseases are a life threatening and life limiting experience.

Hi I am the mother of a handsome child with Nemaline Rod . I love my son and everyday I never know when it will be my last. I hold my son everyday and care for him. If there are more finds, or studies on humans I would love for my son to be apart of the study. My family is attending the Nemaline Rod Convention in New York and Stanford University is conducting a study on children as well as adults who have NM. I wish everyone out there the best and hope we can find a cure for this disease.

If there are calls for human participants in the enclosed research I volunteer and I'm sure my daughter would as well. I have several cousins and nieces who would as well. Thank you for your efforts. You give us hope.

I was excited to read about the new studies done. Is it possible that human trials may be started soon and if so could I get in on that?

I have three children plus myself that have Myotonic Dystrophy. The research sounds hopeful that something can be given to help the muscles to continue to work.

Are there any human trials going on using this type of treatment? If so where is it being done and how does one become involved in the study?

Would you please clarify that the regulations are for customers who will want to use the equipment on the flight. If they are carrying the equipment for use at their destination these regulations do not apply. It is creating a lot of confusion for individuals Thanks

Would myotonic muscular dystrophy respond to this WNT7 Protein?

I hope and pray that someday soon, this will be perfected enough to slow or stop this quick degenration of muscles that I, and so many other people, have. I have SMA and I dread the day I lose all my muscle function and become a "vegetable". I have so many plans to help others in the world, and it would be disheartening if I can't because of a vegitative state. I wish you the best of luck in these endeavours, it is truely important for so many people, not just for myself. Thank you!!

Would this be something for Inclusion Body Myositis?

Is work being done to deliver these types of repairs using nanotechnology? If not, why not?

Thank you for bring this information foward to clients who have Muscular Dystrophy diagnosis and use respiratiory equipment. If equipment does not have an obvious sticker or ID as safe for airlines how does consumer go about getting this verification? Does medical supplier or manufacturer have access to necessary documentation?

I find this information extremely interesting in the fact that I have been told that my nerve cells are in fact dying. I hope this research will continue and look forward to the time they are ready for clinical trials. I'd love to be a part of that.

After reading the success story on the neutrophin 3 gene therapy done on mice I was wondering if and when the therapy may be available for patients? I have inherited CMT from the paternal lineage. I would be willing to be a 'human test subject' ... can that be possible? Other than the CMT I have fibromyalgia and hypothryroidism - otherwise I am a healthy 57 year old female. Thank you.

Excellent work and article. I was part of a spinal cord study at WFUBMC several years ago. Just wondering if Baptist had similar studies done.

In the online information about physical results of , A.L.S., would the extra elasticity of the skin be partly or mostly due to the lost of muscle? Seems this same thing happens when one is not athletic and loses huge amounts of weight. Toning seems to help in this situation. Are therapy exercises helpful to delay loss of A.L.S. muscle? thank you.

My grandson has been diagnosed with dmd. He has turned 5 in Feb. He is small for his age, however he is a dynamo!!!! He wants to do everything by himself. Please help us to cope with what faces him (and us) in the future. Our prayers and blessings go out to the families and those that have these terrible diseases.

I have both narcolepsy and obstructive sleep apnea, and have taken Modafinil/Provigil daily for over two years. This drug has been extremely helpful in fighting my fatigue and in helping with lucidity. It's great to see the possibilities of expanding it's use. It's been a lifesaver for me.

Push this forward! My son of 2 years and I are both affected with MD1. My son has the congenital form. We will also be willing to participate in any trials that would help bring a treatment for this disease.

My son has nemaline rod myopathy. I would like to know how the MDA family would be able to go before Congress and see if they could pass a law on how to receive a caregiver wavier. I don't understand why as a caregiver you cannot receive a wavier to take care of a person with disabilities. Why do we as caregivers have to wait until our child is 18 to receive some type of compensation? I have a wonderful husband and five young children, one of which has muscular dystrophy. Financially, it has been difficult for my husband and I. I had a great job in the library in Chicago and I have had to take a semester off of school to care for our son. I have one more question: Why is there not a law to have mandatory housing for people with disabilities, or a grant to get a accessible home? I am in need of a home but, with the economy, I will have to move to Indiana. The programs that used to be available to purchase a home have been discontinued. As a mother of a child with special needs, I now understand what people with disabilities have to endure and this needs to be addressed by our Congress and President Obama.
--Angelic Echevarria

Thank you for continuing to find a cure for Merosin Deficient CMD. I have a 15 year old daughter with this disease, and I still hope that a cure can be found in her lifetime! Keep up the good work.
--Mary Lorrain

Yes, Push this forward. My entire family is affected with multiple and varied symptoms. We are at your mercy and willing to participate in any trials that would bring a treatment to market.
--Joan Brothers

I was so excited reading about "Gaining Their Sea Legs", and equally proud of these four young men and their family for spending a year at sea. The boys should very proud. When people read my book they often make this comment: Isn't it unusual that both your sons had MD? Now I can show them this article. Great job on the whole family. Sincerely, Rosemarie Note: Rosemarie Walrath is the author of the self-published memoir "My Two Sons: Those Precious and Memorable Years. Our Struggles Through Muscular Dystrophy"
--Rosemarie Walrath

Right on Mr. Brown.I am proud of you for forming this group and doing what you do.Semper Fi.
--Michelle Herd