First adult stem cells from Friedreich's Ataxia patients give hope for new treatment

Is there going to be a clinical trial for this. I live in Louisiana, and my dauther has Friedreich's ataxia. She is going to be 16 this year. Please send me an e-mail with any information on a clinical trial.

I'm Mohammed from Egypt and told the age of 25 years and I hope that you let me know the latest developments in research and post anything I can do, Is there any clinical trials for this?

Hello, Iam Omar from bresbane age 37 year iam suffering from fredrick ataxia please help me and send me email and information about clinical trial. thanks alot

Hello

My daughter Ashley is 23 yrs old. We found out last week she have Friedreich's Ataxia. Please help us. She is getting her BA degree is Dec. She wants to be a teacher. She's a good person and wants to marry her boyfriend of 4 years and have children. She has just starting showing the signs in the past few months. Please help before she gets worse. I will do what ever it takes to help you to help us. Is there going to be a clinical trial for this. Please e-mail me with any imformation on a clinical trail.

Hi I'm Tom I'm 16 and have freidrichs ataxia my signs showed at 4 I was told I have a severe case and can still can walk and I have a brother with a worse case can stem cells help I'm browsing for a cure

My daughter Brittany is 22 yrs old. She was diagnosed at the age of 15 with Friedreich's Ataxia. We have done hours of research on stem cell treatment in China. She is looking for any help possible.Please help before she gets worse. We are currently having fundraisers/benefits to raise funds to cover any treatments. I will do what ever it takes to help you to help us. Is there going to be a clinical trial for this. Please e-mail me with any imformation on a clinical trial.

i am a patient of FA and I was diagnosed with FA in 1999. I'm 27 now and on a wheel chair. i do not suffer with any other ailment like diabetes or cardiac problems. however, i have scoliosis and arched feet. i would like to volunteer in any sort of clinical trial. in any other case you can contact me on my email address given above. I live in Shimla, India. i'll be waiting for reply......... thanx......

My best friend Michelle H was falling constantly at 2 yrs and worsening. She was diagnosed at 4, her back was fused at 18, and by 28 she was fully in the wheelchair. She is a wonderful poet, writer of songs and stories, which is how we met online. Since then, I've discovered she has been mostly isolated by adoptive parents who won't even take her to the ER when she broke her nose. I understand they are tired and have heard them say "Let me live my own life!" We have been desperately trying via internet to find some way to give her her life back. Please help.

Hi my son has been diagonsed with freidriches ataxia two weeks ago, he is ten years old. I would give my own life if it would help him so if there is any trials please let me know please. we live in the united kingdom but will go where ever we need to please help us.

Hi my 2 daughtes were diagnosed in 2000 at the age of 24 and 25, they are 10 months apart , were diagnosed about 10 months apart as the simptoms were starting about 10 months apart and are just starting to use a walker or wheelchair for shopping or outings. They can still walk some and have no signs of heart stress or enlargment as of yet. They do have arched feet now. No diabetes either. We would love more information on treatment and any testing being done. Other than the FA they are both pretty healthy and stay very active considering.
Thank you and God Bless
Judy

I was diagnosed @ 19 and am 44, fulltime wheelchair user, no diabetes or heart problems
would love info on clinical trials

Hello, My son is 17 years old and was diagnosed with Friedreich's Ataxia when he was 9. He has scoliosis and had a spinal fusion 3 years ago. I would be very interested to receive any information on clinical trials or anything which may help him with this terrible disease. Many thanks.

My name is Debbie from Tasmania and I was told I am the only person diagnosed with FA in this state. I was diagnosed 3 years ago, no cardiac problems or diabetes but have had numerous falls and fractures. I am studying social work at uni and desperately seeking support groups located in Aus and would love to be involved in any clinical trials available.
I have 3 children who are yet to be tested. Are there any medicines or herbal supplements I could be taking to offset symptoms ?
Sincerely Debbie Thomson.

Medical Report: Chatib Um Kultum (id# 90006798-4) and Elchatib Chatam (Id# 99984095-2)

The above-named sisters were seen by me on 31/5/09. Their neurological condition is similar. Both have an onset of disease around mid to late teenage with difficulties in coordination. The condition is slowly progressive to involve limb ataxia, speech difficulties, and scoliosis. The elder sister Um Kultum (age 33) is now wheel chair bound, while the young sister (age 23) is walking with marked difficulty.
Examination revealed cerebellar dysarthria, disdiadokokinesis, and intention tremor. There was no nystagmus. Tendon reflexes were absent, but Babinski sign was present bilaterally. There was reduced vibration and position sensation. Scoliosis was noted in both.
The family history is that of consanguinous parents and a younger brother who seem to show early signs of the disease.
The above clinical combination is very suspicious for Friedrich Ataxia, a diagnosis already suggested by previous physicians. The DNA of Chatam was tested here in Hadassah and expansion of the Frataxin gene was found, compatible with the clinical diagnosis of Friedrich Ataxia.
Both patients should have cardiac follow up because of the frequent involvement of the heart in this condition (over 50% have cardiomyopathy). The disease is progressive but does not affect the cognitive functions. Thus, both ladies are encouraged to continue with their education and work as much as possible.
Currently there is no treatment for this recessively-inherited condition. Idebenone given at high doses was recently shown to have some positive effects in patients with Friedrich Ataxia especially on the cardiac complication. This medication is not yet available in Israel but I am aware of plans to add it to the list of approved drugs in Israel in the near future.

Zohar Argov MD
Prof. of Neurology