Thank you to our volunteers!

I wanted to take a few minutes to recognize the volunteers that helped us in so many ways. You are incredible! The list is long, and I apologize in advance if I have forgotten anyone.

First, I’d like to recognize 4 people for whom Angioma Alliance has become an upaid part-time (and at times full-time) job. Our organization needs all our volunteers, but these four are stellar. I don’t know the exact number, but I am sure that each has given hundreds of hours in the past year alone. In no particular order, I want to thank:

Karen Asbury, our Treasurer, who works behind the scenes to keep our budget balanced, our bills paid, and our auditor and the IRS happy. She has enlisted her family to stuff newsletter envelopes, and she helped on site with the scientific workshop. This year, Karen lost her husband Mitch to a complication of his cavernous angiomas – he developed an aggressive, rare cancer at the site of his brain surgery. The cancer was likely the result of his exposure to many, many CT scans over the years. Karen has an affected daughter as well and she is doing everything she can to further the mission of Angioma Alliance to drive research for a cure.

Kirk McElhearn for the expertise and dedication he has contributed to the website, the newsletter, the forum, and basically, everywhere he is asked. He doesn’t toot his own horn, but I believe that Kirk has put more volunteer hours into Angioma Alliance this past year than anyone but me. And next year, I can promise that he’ll be even more needed.

Rachel Hart, who could not take on the formal position of Fundraising Events Manager when it became available again last Spring, but who appears to have taken on many of the responsibilities as a volunteer. She nurtured not just her own event last March, but two that followed, and is on tap to help with several more in 2011. She has also been critical in putting together this coming year’s patient and family conference. If that weren’t enough, Rachel serves on the Board of Directors.

Libby Davis who is a moderator and provides support on our Community Forum,  to our Facebook group members, and to the people who email requests for information and support. She checks in on the Community Forum every day, multiple times a day, and is dedicated to keeping this community vibrant and helpful.

There are many, many other people I’d like to thank, and I will be briefer:

Norma Villa for coordinating the peer support program that has provided many people their first caring contact with another person who is affected by the illness. She also regularly visits people who are having surgery at St. Joseph’s in Phoenix. There are 2 peer supporters that I’d like to particularly call out – Elizabeth O and Wes H – who, despite being busy people, always make themselves available when called. I’d also like to thank beckyinaz for helping everyone she can that comes through Phoenix for surgery.

Savannah Hollis, a member of the Board of Directors, for becoming our social networking expert, finding new ways to reach out to the public and affected individuals, and being a co-organizer of the 2010 Dallas FunRun and the 2011 Dallas Patient Conference.

Everyone who has organized a fundraiser. We could not exist without you. I can’t thank you enough because I know how much work these are:

Andy and Marissa Amador and Mike and Shawn Blom organize the MadoroM wine auction. Neither of these families is personally affected by cavernous angiomas – they make this enormous contribution as a tribute to friendship.

Kathy Bince, Alex Mejia and friends who organize a Cinco de Mayo dance party each year.

Brooke Mueller (Otownmama) and Delia Candelaria who did amazing jobs organizing FunRuns in their home towns in September.

Kim Elfersy who began BookIt4Brains selling books that she collected

Alexis and Kylie Buck, middle school twins who, along with their friends, knit and sell scarves and who organized a flapjack breakfast fundraiser.These girls continue to impress.

I’d also like to thank the other members of the Board of Directors who offer their expertise in many areas, plus wear hats they may never have thought they could: Christine Castellano, Kandance Weems Norris, Kristen Dehn, and Sara Sukalich as well as our ex-Chair Ron Schechter.

Joyce Gonzales who continues to reach out in New Mexico where she has begun visiting far flung towns to get people to the help they need.

Everyone who serves as a peer support volunteer – the work you do is so meaningful and I hope that you get something from it as well.

Everyone who participates in the DNA/Tissue Bank and who has signed up for the patient registry. These are large contributions to the future of this illness. The DNA/Tissue Bank, in particular requires a willingness to follow through with forms, phone calls, and even lab visits – thanks for giving everyone this gift.

Everyone who has a Firstgiving page or has found some other way to encourage friends and family to contribute to our work.

Bloggers calabresella and Kelley, authors Mark Seymour, Les Duncan, and Rivka Zucker, and videographer Patti G who spread the word far outside of our circle.

Some folks who have worked hard behind the scenes – Claire B, a freelance reporter, who has been working to get us press coverage in major newspapers, Cristina S who developed a strategic communications plan for our patient registry and DNA/Tissue Bank, Deb J who helped with grant applications, Linda – a Fan of Barrow – who has just started helping with website editing (I am smiling because this is news to her). Jean S and Bonnie M who are also just beginning as volunteers, but who I know will make big contributions as time goes on.

Our Scientific Advisors who continue to touch me with their caring and willingness to share their time without an expectation of anything in return.

Everyone who supports another or reaches out for support on the Community Forum – the Forum remains the heart of our community.

And Ian Stuart who, as founding co-ordinator of Cavernoma Alliance UK, is a brother-in-arms across the pond. He continues to develop creative ways to improve the lives of people affected by cavernous angiomas in the UK and Europe and to marshall the resources to carry out those plans. He is an inspiration and a joy, as those of you who have met him can attest. I’m happy to report that he’ll be joining us in Dallas in March.

I am sure I have forgotten people – again I apologize. Every person on this list, named and unnamed, is a contributor and I am deeply appreciative for all that you have done. I hope that you will continue helping this community and those who have yet to find it as we move into the new year. Without you, there can be no cure.

With gratitude and deepest affection,
Connie

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