Connor's ASAP Awareness and Fundraising Event
Raising funds for research, education and awareness. Providing support and programs for the cm/sm community since 1988.
|WHEN: May 22nd, 2016 1:00 p.m. - 4:00 p.m.|
WHERE: Heckscher Playground, Central Park, N.Y. 10019 w59th St & 7th Ave OR w59th St. & 6th Ave.
Why: Raising awareness and greatly needed research funding AND TO HAVE A GREAT TIME!
Thank you for visiting Connorís page!!!
I am Brenda Yung and Connor is my son. Connor and I are affected by Chiari malformation, syringomyelia, and Ehlerís-Danlos Syndrome. Simplified, Chiari is a herniation of the hindbrain, Syringomyelia, or syrinxes, are fluid filled cysts in the spinal canal, and Ehlerís-Danlos Syndrome is a disorder of the connective tissue. Individually, each of these can be devastating. Collectively, the symptoms can be unbearable. Severe headaches, severe chronic pain, tingling, numbness, partial paralysis, loss of muscle control, choking, loss of strength, and the list goes on and on. Every day brings new challenges as we struggle to live with our symptoms. It affects every hour and minute of our lives.
There is no cure. Each of these conditions can be treated, but not cured. Treatments vary from prescriptions for pain control to surgery. Since these disorders are uncommon, often patients will not be properly diagnosed for years. Even with proper diagnosis and treatment, these debilitating conditions affect every day, every hour, every minute of our lives.
Connor and I are very fortunate to have found doctors that are able to properly treat us, sadly there are still over 500,000 people, just in America, who still suffer in silence and anonymity. Thatís why we teamed up with ASAP to hold this event, WE WANT TO MAKE A DIFFERENCE! This event will raise much needed awareness and research funding to help everyone in the cm/sm/EDS community.
COME JOIN US! We have a great day planned, and we would love for you to be a part of this great event!
Click the register button and get started now. REMEMBER to SHARE with your friends!