We invite you for a morning full of joy, dance and community. We want you to celebrate with us the power of unity while supporting a great cause.
Our goal is to raise funds through this dance to donate 100% of the proceeds to Cure Tay-Sachs Foundation (CTSF). Your contribution will help CTSF fund ongoing research needed to develop treatments like Gene Therapy in order to help find a cure for Tay-Sachs Disease. Let's give hope to #teamdrewCTSF!
Suggested entry donation $15+ | No experience necessary
ABOUT NIA TECHNIQUE®
Nia is a mindful workout that combines the joy of Dance, the power and precision of the Martial Arts, and the body-centered harmony & relaxation techniques of the Healing Arts. Nia has been reshaping bodies and minds around the world since 1983. Our philosophy: Through Movement We Find Health.
WANT TO HELP BUT CAN’T ATTEND?
We encourage you to share Drew’s story (↓↓↓) and urge others to follow your lead. If you are interested in making a contribution online visit: www.curetay-sachs.org to make your donation and type #teamdrewCTSF in the comment section (the website takes PayPal and any credit card).
Facebook event: Nia Fundraiser Dance for #teamdrewCTSF
"I've been contemplating sharing our story but now I feel the world should know. I am ready to engage our friends, our family and our close and distant community about this and what we are going through. I want to create awareness for those who do not know about Tay-Sachs and I want to find a way to save my son Drew. For those of you who have the joy of being a parent I know you understand the undying love for your child. You know they become your air in your lungs. Now imagine for a second you've been told your ‘air’ won't be there by age 4. And everyday until then you must help them breathe, cough, move, eat, medicate and repeat. Did I mention sit by and watch them SEIZE hourly. As this is my new life as nurse/care taker my heart slowly rips away. I fight every minute of everyday with these crazy demonic thoughts of what could possibly happen to my son. I constantly remind myself to stay strong and hope all our efforts and those supporting not only our cause but CTSF will help save Drew."
-Brianne Anderson, Drew's Mother
Drew Anderson son of FSU Alumni Brianne and Adam Anderson, was recently diagnosed with a rare genetic disorder called Tay-Sachs. Tay-Sachs is a disorder that progressively destroys nerve cells in the brain and spinal cord. At this stage there is no cure for Tay Sachs, but there is palliative care which is mostly supportive and directed to providing adequate nutrition and hydration, managing infectious disease, protecting the airway, and controlling seizures. Unfortunately most of this including medical devices, are not covered by insurance. There are several studies and clinical trials that are on the brink of FDA approval but Gene Therapy seems to be the most promising. Because there are currently only a handful of children like Drew battling Tay-Sachs in the U.S., financial backing for Gene Therapy has become extremely difficult. Hence the creation of CTSF.
The Cure Tay-Sachs Foundation is a 501( c )3 public charity formed in 2007 by parents and friends of Tay-Sachs children. It was created to fund research initiatives that show promise to treat and ultimately cure Tay-Sachs disease (TSD). The foundation has grown into the largest private funder of Tay-Sachs disease research having raised more than $4 million for Tay-Sachs disease research. The cutting edge neurological disease research we support will ultimately impact other conditions like Parkinson’s and Alzheimer diseases- to name a few.
The Cure Tay-Sachs Foundation has issued over $2,000,000 in grants to the following research groups since it’s inception:
- Tay-Sachs Therapy Consortium
- UC Davis Gene Therapy Project
- Boston College GM2 Inhibitor Study
- Telethon Institute of Genetics and Medicine
- Cyclodextrin Study- to name a few!
Learn more: www.curetay-sachs.org