Dysautonomia Advocacy Board Formed to Combat Little-Known Condition

Group to Provide Support and Educational Information

CHARLESTON, SC –  Inspired by the courage and commitment of a friend suffering from a largely unknown but debilitating condition, a local group has come together to form the Dysautonomia Advocacy Foundation.

In the summer of 2000, Charleston native Ainsley Glenn was involved in a serious car wreck while working in Washington, DC. The accident left Ainsley with a number of serious injuries, though she seemingly recovered after a long convalescence. Three years ago, however, Ainsley’s body began to break down due to a number of underlying issues that lingered on in the aftermath of the accident.  She began to suffer from of an array of symptoms which left her suffering from continuous pain.  Her doctors were puzzled while Ainsley was often exhausted and frustrated by what appeared to be mysterious illness.

For many years seemingly unrelated symptoms made a diagnosis by her physicians elusive. The Dysautonomia diagnosis was given in 2013. This resulted in her extensive research and realization of the large number of patients who wanted more information and medical care from physicians with knowledge of this diagnosis.

Individuals suffering from Dysautonomia experience a collapse of their involuntary nervous system. Instead of regulating the vital functions of the nervous system, the body essentially turns on itself.  Racing heart, sweaty palms, dry mouth, upset stomach, shakiness are just some of the conditions victims of Dysautonomia suffer from on an unceasing basis.

Instead of allowing this diagnosis to overwhelm her, Ainsley saw it as an opportunity to work towards medical relief of and even a possible cure for Dysautonomia. Attacking the illness as hard as it had attacked her, Ainsley began to reach out to friends and family to help her in her struggle.  She also established a Facebook page to spread awareness and serve as a forum for others who may have been suffering from this condition in silence. The response was overwhelming. A little more than two months after it was created, the “Dysautonomia Foundation” page is fast approaching 7,000 “likes.”

Ainsley’s friends were quick to rally to her cause as well, and twelve of her strongest supporters recently volunteered to form the Dysautonomia Advocacy Foundation (DAF) under her guidance.

The DAF Board is comprised of:

• Sarah Glenn Smith, President
• Richard Geer, Vice President
• Bratton Riley, Treasurer
• Hayden McIntosh Geer, Secretary
• Lydia Applegate
• Acey Boulware
• Thomas Boulware
• Mary Hart Craig
• Lori Christopher Glenn
• John Liberatos
• Randolph Pritchard
• David K. Shimp

Given that October is “Dysautonomia Awareness month” the newly formed all-volunteer board quickly set a team goal to raise $25,000 by the end of the month towards its mission. The group’s fundraising efforts will be highlighted by two campaigns:

• The Tie One On” promotion in which individuals can purchase one of three specially-designed rope bracelets to show their support.  Bracelets are available through the following web site:
• https://www.etsy.com/shop/WhatKnotShop/search?search_query=Dysautonomia&order=date_desc&view_type=gallery&ref=shop_search
• The Dysautonomia Advocacy Foundation’s Launch Party at the Midtown Bar & Grill at the Midtown Bar & Grill in Downtown Charleston on October 29^th.  Tickets for the party are available for advance purchase at: For more information on the Dysautonomia Advocacy Foundation, please visit:http://www.dysautonomiafoundation.org/#!dysautonomia/mainPagehttps://www.facebook.com/DysautonomiaFoundation###
• http://www.eventbrite.com/e/dance-away-dysautonomia-launch-party-tickets13719811325?aff=efblike: