First Annual Golf Outing for The Siegel Rare Neuroimmune Association
POWELL, Ohio – The Siegel Rare Neuroimmune Association (www.wearesrna.org) will be holding its First Annual Golf Outing at the Scioto Reserve Country Club in Columbus, Ohio on Monday, September 29, 2014. The purpose of the event is to promote awareness about rare neuroimmune diseases of the brain, optic nerve and spinal cord such as transverse myelitis and neuromyelitis optica, and to raise funds to support research and advocacy efforts for the many individuals and families who struggle with these disorders.
The golf outing recognizes SRNA’s 20 years of service to the community. “My wife, Pauline, was a healthy 35 year-old and was teaching kindergarten in the Worthington Schools when she got TM. She was totally paralyzed from the waist down in a matter of minutes. Pauline got TM in 1994 and, through her experience, we established The Siegel Rare Neuroimmune Association. We don’t know what causes these rare neuroimmune diseases to occur and no cure has yet been found. Recovery, if any, is different for every case. Now, more than ever, it is time for us to heal the world for those people and their loved ones who suffer with these rare and devastating neuroimmune disorders,” says Sandy Siegel, President of The Siegel Rare Neuroimmune Association. These rare disorders affect individuals of all ages; approximately 25-30% of those affected are children. These diseases strike at any time without any warning. A person will experience a sudden acute inflammatory attack of the spinal cord, brain or optic nerve, with initial symptoms such as weakness, paralysis, blurry vision, bladder and bowel dysfunction and loss of sensation. Although some patients will recover, many experience permanent, devastating disabilities including paralysis, quadriplegia, ventilator dependence, pain, depression and blindness.
The event kicks off on Monday morning with a best ball scramble and will be followed by a dinner and silent auction, accompanied by a presentation from guest speaker Dr. Benjamin Greenberg, Director of the Transverse Myelitis and Neuromyelitis Optica Center at the University of Texas Southwestern. Dr. Greenberg will speak about the state of research on the rare neuroimmune disorders.
Major sponsors of SRNA golf outing include Aetna, The Narducci Family, OhioHealth, Boeing, Hanger Clinic, Fifth Third Bank, Kylene H. Fernandez, DDS, MS Mill Run Pediatric Dentistry, Monks Copy Shops, Giant Eagle, Starbucks and Tim Hortons. Many local businesses have also generously supplied items for our silent auction and donations.
About The Siegel Rare Neuroimmune Association
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international foundation dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders – Transverse Myelitis, Neuromyelitis Optica, Optic Neuritis and Acute Disseminated Encephalomyelitis. Membership of SRNA includes individuals with these rare disorders, their family members and caregivers, and the medical professionals who treat individuals with these disorders. SRNA currently has over 10,500 members from more than 80 different countries and has a large number of support groups across the United States and around the world. SRNA empowers families, clinicians and scientists through education and awareness programs and supports novel research and training of clinician-scientists focused on rare neuroimmune diseases. More information is available at https://wearesrna.org.
For media inquiries or additional information:
Sandy Siegel, President
The Siegel Rare Neuroimmune Association
1787 Sutter Parkway, Powell, OH 43065
Phone: 855-380-3330
Email: [email protected]
