Illinois resident Arvind Sreedharan has been named HDSA’s Illinois Chapter President. Last year he served as the Vice President.
Arvind has more than thirty years of pharmaceutical experience. He is currently the Senior Vice President of Business Operations at Neurogene Inc., a biotech company focused on developing life-changing genetic medicines for patients and their families affected by rare, devastating neurological diseases. He previously served as Vice President of US Commercial Operations at AveXis, Vice President of Marketing at Auspex Pharmaceuticals, and as Director, Movement Disorders at Lundbeck.
Mr. Sreedharan played a key commercial role in the successful product launch and management of Xenazine®, the first FDA-approved drug for the treatment of chorea associated with HD. At Auspex (Now Teva Pharmaceuticals), Arvind led pre-commercialization activities for Austedo® (deutetrabenazine), which was approved for the treatment of chorea associated with Huntington’s disease (HD) in 2017.
HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
During his time at AveXis (now Novartis Pharmaceuticals), he led key business/pre-commercialization activities for the proprietary gene therapy candidate, Zolgensma, which was approved for the treatment of Spinal Muscular Atrophy in 2019.
He became engaged with the HD community as he talked to more families, attended more than eight HDSA National Conventions, had education days, and more. During this time, he observed how devastating it has taken a toll on patients and their families.
According to Arvind, he was floored by the determination of families affected by HD and finds inspiration in the perseverance and the positive frame of mind of the HD families. Arvind truly believes that HD families are the epitome of resilience.
Arvind served on the HDSA’s National Board of Trustees for six years guiding and governing the mission work of the Society. According to Arvind, HDSA’s Board of Trustees sets the goals for HDSA, ensures the best care is available for families and comes up with new ideas to support the community. During his tenure, Arvind focused on patient care and disease state awareness and he continues to serve on the Center Program and Education Advisory Committee, which oversees the HDSA Center of Excellence program.
Through his work, he has gone to many HDSA Centers of Excellence across the country. HDSA Centers of Excellence provide a unique team approach to Huntington’s disease care and research. Patients benefit from a ‘one-stop shopping’ approach to access expert neurologists, psychiatrists, social workers, therapists, counselors, and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.
“The HDSA Centers of Excellence is the cornerstone program of HDSA and has evolved into an exceptional model for multidisciplinary patient care in rare neurological diseases,” said Arvind.
After his tenure with HDSA’s Board of Trustees, he still wanted to help others but now on the local level. As HDSA’s Illinois Chapter President, he is committed to continuing to build on the Chapter’s ongoing success in assisting HD families and serving as a model for other chapters.
Arvind has a message for the HD Community:
“Your bravery is beyond commendable. We need to eradicate HD.
I feel strongly that the HD Community has done so much for me as
I have for them. I am passionate and supportive of the community.
It is imperative to give it back, and I will not walk away
from a community that has been so close to me.”
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at email@example.com