Editor’s note: Allison shared her story on CNN on February 26, 2014. Allison has also created her own video sharing her experiences of being diagnosed with GPA/Wegener’s at the age of 16. Allison’s goal for the video is to provide a perspective for young people because so much of the information provided is from the older person’s perspective – whether doctors, parents, older relatives, or elderly folk diagnosed with the same disorder. Allison hopes the video will “rally the troops of young people living with vasculitis, and drive the point home that there are LOTS of us who struggle with it.”
At the age of 16 I suffered an extreme lung hemorrhage that nearly took my life, and four months later was diagnosed with GPA/Wegener’s (Wegener’s Granulomatosis at the time). Since then I have gone through standard treatments, suffered 2 relapses, and struggled with injections, steroids, and maintenance medication. Through my teens and early 20’s I realized I wanted to do something to fight back against this rare disease, and help others who had been diagnosed as well. A friend inspired me to do something unprecedented to raise support for vascular disease, but it took me several months to decide exactly what that was.
In January of 2011, I made a phone call to Lynn Corwin, the Cleveland-Akron chapter leader for the Vasculitis Foundation. I had never met Lynn but somehow I knew she was the right person to call. I told her that I was thinking of starting a monumental project, that involved traveling around the country in the name of vasculitis awareness, and asked for her thoughts. She was thrilled with the idea, and much to my surprise, promptly asked me to be the featured speaker and musician at the next chapter meeting, where I introduced the project to my first big audience only 10 miles from my hometown.
Since that time, this awareness initiative named “Violin 4 Vasculitis” has seen 19 concerts in 15 states, raised almost $3,500 in support, and connected with a larger audience than I ever thought possible. The goals of my project are:
1) To raise awareness of vasculitis
2) To donate funds to the Vasculitis Foundation, and
3) To connect with patients and their families in each area, particularly teens afflicted by chronic illnesses.
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Allison has performed in the following states:
California, Colorado, Connecticut, Delaware, Georgia, Kansas, Kentucky, Maryland, Michigan, Missouri, Nebraska, New Mexico, New York, North Dakota, Ohio, Pennsylvania, Utah, Virginia, West Virginia and Wisconsin
Help Allison achieve her goal of performing a concert in all 50 states! Has she performed in your state?
If not, please contact her.
As a professional musician freelancing and teaching in the Northeast Ohio area, the most natural way for me to accomplish these goals is to do what I do best – so I use music as my tool to reach an audience. My “informances,” or informational performances, include a 50-minute program of music interspersed with information about the disease and the story of my personal struggle. I always conclude the hour with a Q&A, because where attendees ask questions is where they learn the most. Concert programs range from classical to jazz to contemporary music, and often I collaborate with local area artists and musicians.
The travel aspect is both unpredictable and completely rewarding….
– In Wisconsin, I happened to play a concert on the same day as the biggest governor recall election in U.S. history (unbeknownst to me during the planning stages) – with news crews and outraged citizens lining up just a few blocks away from the performance location in downtown Madison.
– My father has relatives in Kansas City whom I had never had the chance to meet before I played at the symposium there; during our down time, they took me to a church where my late grandmother (a Julliard graduate and source of my musical genetics) had served as organist for 50 years.
– Playing in Ann Arbor, Michigan offered a chance to reconnect with my sister (a conservatory-trained cellist) and some longtime musical colleagues for V4V’s very first chamber music concert.
– One of my favorite locations to date took place inside a modern art gallery owned by a friend of mine in Colorado Springs, who also played piano for my program. It was a relaxing, intimate space, and that evening remains one of my favorite events to date.
Many times I get asked, “How does your project fund itself?” – and that is exactly the answer. I raise just enough money in each location to afford the next event, and donate the rest to the Foundation. In this sense it is a non-profit, though not technically registered as a 501(3)(c), or at least not yet. Usually basic travel costs are deferred by my hosts in each region – for example, I have not yet had to pay for a hotel stay. The airline tickets are to this date the most challenging expense, but I am working on ways to make this a little simpler as well (and donations of airline miles are always welcome). If a state is within driving distance of Ohio, I simply make it into a road trip. My family have always been strong supporters in what I do – having been there during the dark days – and have travelled across state lines to hear me tell my story, though they lived it.
V4V concerts have reached anywhere from 10 to 200 people in a room at one time. Aside from project-specific events, I have also been invited to play at symposiums in Long Beach, Kansas City, and Atlanta. The best part of the outreach is not immediately gratified, but comes at the time when I realize I have been keeping in touch with vasculitis patients far beyond just one hour of music. A couple in Pittsburgh, knowing I am an avid dog lover, send me pictures of their Labradors through the seasons as they go fishing, hiking, swimming, and playing in the snow.
That couple embodies the third goal, and to me, the most important aspect of V4V – connecting to others. During my days of illness, I needed supportive friends and relatives around me; later, it was equally important to meet other patients who had been through what I had. A beautiful illustration of this happened during a concert in Madison, Wisconsin. A woman we’ll call Patricia was in attendance who had been struggling with heavy steroids for upwards of 2 1/2 years, and was completely drained and depressed from her journey. She enjoyed hearing the music, and seeing other GPA patients who were healthy and in remission. But when I spoke to her after the concert, she couldn’t keep back the tears of frustration. I asked if she had a local chapter or support group, to which she responded “no”… then slowly looked around at me, another vasculitis patient and others who had come out to support the cause, and smiled and answered, “I do now”. Though I began the project for reasons of my own, sometimes seeing just one person find hope is worth the whole experience.
Initially the project was slated to take place over a period of a few years, but it is apparent now that it will go at its own pace. I am now simply hoping to reach every state by my 30th birthday. My goal is to get a segment on national news – perhaps a morning show or special-interest story – just before reaching the last of the 50 states. Imagine the level of awareness that could bring to vasculitis! A doctor in Israel and numerous patients in Canada and Australia have contacted me about taking V4V internationally. But in the meantime, there are 36 states to go.
If you would like to host a concert, offer a helpful tip, or otherwise get involved with Allison’s project, email Allison.
Keep updated on V4V’s travels through Allison’s Facebook page.
Thank you for your support!