The Dysautonomia Advocacy Foundation (DAF) was recently formed by Charleston native Ainsley Glenn. She herself a patient, Ainsley had struggled with finding a diagnosis for her ongoing health issues. The organization is designed to bring information to those seeking answers and provide a forum for sufferers of this rarely known, but not rare disorder. Because dysautonomia is relatively unknown the diagnosis does not come easily. DAF hopes to create awareness and open avenues within the medical community to support those affected.
Founding Director, Ainsley Glenn was involved in a serious automobile accident which is the ultimate cause of her health issues. “I was hit by a driver going 80 miles per hour,” Ainsley explains. “The accident ruptured my lumbar spine.” After multiple surgeries and a bone fragment was successfully removed from her back she began to recover. However, the recovery was not what she had hoped. “I would have periods of time when I was well and then I would have periods of time when I was in bed, unable to move. Then I would pop up and be fine again.” Eventually her body began to break down. Suffering from constant pain and a variety of symptoms, she began seeking answers. With the help of her father, James A Glenn, M.D., a cardiologist and E. Benjamin Clyburn, M.D., an internist, a diagnosis was at long last made.
Ainsley educated herself on her diagnosis of dysautonomia, which refers to a group of disorders caused by a malfunction of the autonomic nervous system. In essence the body turns on itself. The nervous system no longer regulates the vital functions properly resulting in symptoms such as sweaty palms, racing heart, upset stomach, dry mouth, dizziness, and fatigue without relief. She has organized DAF to bring attention to the group of disorders that fall under the Dysautonomia category. While no cure is offered at this time, Ainsley is fighting tirelessly to support others and with awareness there is hope.
Nonprofit Name: Dysautonomia Advocacy Foundation
Twitter Handle: http://twitter.com/dysautonomiaSC
Facebook Page: www.facebook.com/DysautonomiaFoundation
Google +: http://plus.google.com/u/0/b/117179851347740884986/+DysautonomiafoundationOrgDAF
Mission/About: Dysautonomia Advocacy Foundation’s (DAF) two primary goals are to educate the medical community and patients alike about the signs and symptoms of dysautonomia. Also we aim to bridge the gap between social media and medical research creating ways to find commonalities in patients suffering from this painful and debilitating underserved syndrome. Our ultimate goal is to fund programs that lead to treatments and ultimately a cure.
When and who founded the nonprofit? Ainsley Glenn is the Founding Director and a patient herself. She formed DAF in July 2014. The board was formed in October, 2014. There are 14 board members and 1 advisor.
Is the organization a 501c3? We have filed for 501c3 status. In the meantime, Palmetto Project has agreed to act as our fiscal sponsor, so that all donations are tax deductible.
How efficient is your nonprofit? What percentage of donations of all product and financial donations received go toward helping others vs. administrative expenses? We have had limited administrative expenses since our inception in October. Our goal is to keep our administrative costs as low as possible by utilizing the talent and time of our experienced board members with diverse professional backgrounds. For example, one of our board advisors designed our brand package.
Where are you based and what sets the organization apart? We are based in Charleston, SC, but our reach is international thanks to the strength of our social media campaign. When starting DAF, we knew we wanted to tap into the powers of social media to disseminate cited and researched informations to a rare group. Those with a rare illness are hungry for information and the Facebook page provides a platform for discussion and sharing of ideas. Our social media prowess will be put to scientific use where we can make massive change. We have presented our successes to a potential global sponsor, and we will both organically and proactively, as we raise more funds, attract researchers and scientists alike. While we plan to host events within our local community, our fundraising focus will be via social media which will save us the costly overhead of typical non-profit fundraising. We aim to bridge the gap between social media and research, and although not a direct goal of DAF, we could potentially provide the blueprints for other medical non-profits to follow suit.
What initiatives is the organization currently working on? There are estimated to be 70 million people suffering from varying forms of dysautonomia. This community is underserved and there are an insufficient number of medical professionals who are trained to identify the symptoms that would point to opportunities for effective treatments, therefore our first initiative in the works is creating a Universal Checklist for patients and medical professionals to download from our website and Facebook page.
This study will be done with a grant provided by Dysautonomia Advocacy Foundation to the Medical University of South Carolina division Institutional Review Board. The survey provided for our team members will have approximately 200 questions. This data will support the creation of an instrument that keenly outlines the most identifiable symptoms and also provides a needed reference plane for diagnosing physicians.
This checklist will be just the beginning of our capabilities. We have one of the largest groups of patients and caregivers diagnosed with dysautonomia. Our access to this group is the stepping stone to many more surveys that will be scientifically valued and used in research and cited articles regarding dysautonomia.
The current wait time for an appointment with a specialist is over 2 years, and for many, these physicians are geographically difficult to get to, especially for those with limited funds and for whom travel is difficult. We aim to hire a fellow and/or a specialist who would represent our DAF website. Physicians around the world can set skype/facetime appointments with our specialist who can, in real time, visually advise the physician and talk to the patient.
Currently we are working on two pitches for the calendar year 2015. First, is putting together a proposal for the potential of presenting a talk on TedMed. Ted has a powerful audience of global leaders looking for ideas to seed in order to make health and medical breakthroughs. We will not be focusing on dysautonomia as an underserved syndrome, but rather how our foundation is utilizing social media to reach more patients and physicians. Thus, creating a platform for other rare diseases to garner needed attention and raising awareness to the general public as well as physicians.
We then aim to expand on our Universal Checklist. We have a larger initiative to join forces with another foundation to write a dysautonomia textbook which we would introduce to medical universities throughout the nation. Starting with our “Tie One On” campaign, we have been creating monthly challenges where participants post pictures of themselves. We then vote for the winner and send them a branded DAF gift such as a T-Shirt. The goal of the challenge is to maintain contacts, raise spirits and to continue to spread the word about this rarely known syndrome via social media.
What annual fundraising events does the organization hold? This past fall, we had a successful launch event- “Dance Away Dysautonomia” at a donated local venue. The goal of the event was to introduce Dysautonomia to the local community and to raise seed money. We enlisted Improv actors, who were board members’ friends, from Theater 99 to host an improv dance game with a local DJ (a la the Jimmy Fallon skit). Inspired by our founder, the philosophy was to use humor to provide hope. To find light in the dark. Our board was formed in early October, and we put this event together in 3 weeks to take advantage of October being Dysautonomia Awareness Month. We are very proud that we tripled our investment. Although this event was successful, what will set DAF apart is our focus on raising money via social media, however we feel we have an obligation to involve our local community and a spring event is in discussion. We are exploring a family-oriented outdoor event which would be simple and cost effective.
We are also working on expanding our merchandising program as a means to increase our revenue. We currently have a relationship with a jewelry maker who gives us a share of each bracelet sold for our “Tie One On” campaign. We promote the bracelets on our Facebook page. Our merchandising program will expand to produce t-shirts, “dammit” dolls, blankets, and more.
What achievements is the organization most proud of? One of our first tangible success stories occurred this October. An HIV physician in New Orleans contacted us to tell us that after seeing our page, he was able to diagnose one of his patients with dysautonomia. We hope to multiply these emails.
Recently a distraught mother of a patient found our website after her son’s condition was dismissed multiple times by under informed physicians. Armed with information from our site, she met with a new cardiologist. This cardiologist agreed with the mother’s researched beliefs regarding her son’s diagnosis, and after further research and testing, the doctor diagnosed her son with dysautonomia.
We are very proud of our Facebook campaign’s success which was recently featured in the Charleston Mercury’s January cover story. We are proud that we have provided a safe place where countless supporters bravely share their stories providing courage and hope to their comrades around the world.
Do you work with any brands on cause marketing products or services? We have put in a sponsorship application to Nuun. Nuun produces “portable hydration” in tablet form which is primarily marketed to athletes. The first line of treatment for Dysautonomia patients is to drink anywhere between 2-4 liters of water a day and to ingest 2100-3100 mg of sodium to help treat the symptoms. Their product provides a way for patients suffering from this rarely known syndrome to meet the required hydration and sodium needed per day. Furthermore, they no longer have to lug around gallons of alternative products which are filled with allergens, carbohydrates and sugars which are harmful to many Dysautonomia patients.
How can people get involved? First things first. Like our Facebook page. Liking not only shows your support, but the more “likers” we have the more attractive we look to potential sponsors. Participate in our monthly challenges. Buy a bracelet or other merchandise. Spread the word with friends and family. Donate money. There is a link on our website and facebook page. If you are local, we are looking for local sponsors. Also, we could use donated venues, service and items for future local events. If you have a space, service or product you’d like to donate or if you’d like to be our sponsor, please contact us.