What is Ataxia?
Ataxia is a neurological disorder primarily of the brain’s cerebellum. Ataxia affects the balance, mobility, speech, bowl movement, fine motor coordination and swallowing. Two parents can posses a gene that is passed on to their offspring.
In the case of hereditary Ataxia the disease is passed on from generation to generation. There is no known cure for this disease. Research has made great progress in finding a cure , stem cell research and eliminating the gene that causes Ataxia , but more needs to be done.
Knowledge is Power!
Now no one has any excuse not to test genetically if you suspect that something like a rare disease could exist anywhere in your family DNA. You have the power to break the cycle of pain and suffering. People have this responsibility – especially when it comes to family planning!
TRANSFORMATIONAL!
We are experiencing changes from our collective thinking about everything from climate change to electric cars and renewable energy – from going green in our daily lives to healthcare.
The advances scientific research and medical geneticists have made on the affects of people living with Ataxia and other rare diseases has truly been transformational. The SCA network and the CACN1A Foundation in collaboration with the Gomez Lab at Chicago university have found ways to enhance the lives of people living with Ataxia type 2 & 6 to replacing the gene responsible for Spino Cerebellar types, epilepsy, pediatric Brain movement disorders and possibly Alzheimer’s disease – and so much more.
We might not be able to cure the situations but a definite solution in the way we get tested for hereditary disorders and many treatments of the named diseases above have been developed. Research and medicine is so close to making the lives of so many change in a positive way.
A great website for all types of Ataxia
Euro-ataxia is a non-profit, non-governmental, European organisation representing people in Europe with ataxia.
A-T Children’s Project
FARA (Friedrichs Ataxia Research Alliance )
The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia.
Solution Project Partnership Program
This is a RARE opportunity. The Solution Project is very focused on the future of Ataxia research, Ataxia education and Ataxia patient care.
The development of the knowledge of Ataxia , on a worldwide level , has grown exponentially as technology and treatments for Ataxia evolve.
In partnership with the Cleveland Clinic of Abu Dhabi Neurological Institute , Centre of Excellence in Ataxia John Hopkins Ataxia Centre and UC San Diego research a special program designed to foster global knowledge of Ataxia has been created. And direct patient care assistance to people with Ataxia mobility issues has been created.
The program involves the following institutions:
John Hopkins University of Medicine- Maryland USA UCSD = University of California at San Diego ( Stephanie Cherqui genetics lab ) Gene Therapy Initiative – San Diego University Health Department Solution Project Global Ataxia Mobility Aide / Patient Assistance Companies
These institutions value education, innovation and research for Ataxia.
Contact : Martha.harlam@icloud.com for information about the program!
Ataxia – a tale of survival and hope
A Member of the Solution Project
“The doctors stood around my bed as they gave their diagnosis of the neurological tests. They were all unanimous in their decision. They all said I would need to give up my singing contracts and start to retrain for a new profession. But what that should be, they didn’t say. This was a scary pivotal moment in my life. “
A Member of the Solution Project