January 2012 Letter to the Community

January 17, 2012

Happy New Year from Angioma Alliance!  The Board of Directors wants to let you know about the plans that Angioma Alliance has for 2012. It is an exciting time for both Angioma Alliance and all those affected by cavernous angiomas as the scientific community moves closer to finding a cure. The statement “Without you there can be no cure!” has never been more true than now.

A major initiative for the coming year will be our 1200 in 2012 campaign. It is our goal to have 1200 participants in The International Cavernous Angioma Patient Registry by the end of 2012. As we start the year, there are 385 people who have taken the time to register. To reach our goal, we need your help! If you have cavernous angioma, please register today at www.angioma.org/registry. Also, please encourage family members and friends with cavernous angioma to do the same. The patient registry will allow researchers to quickly identify people who may be willing to participate in studies to see if medications can prevent the potentially devastating effects of active cavernous angiomas.

We also expect 2012 to be a year of further growth of Angioma Alliance Action Groups. Action groups are intended to create ways for our members with similar characteristics, such as location of lesions or geographic location, to come together. Our first Action Group, CCM3 Action, is making good progress toward setting up a clinic for those with the CCM3 mutation, has created a website and promoted networking. For more information about Action Groups, please see the Fall 2011 newsletter archived on our website at www.angioma.org/documents/2011FallNewsletter.pdf

A change this year will be the transition of Connie Lee, Angioma Alliance Founder and President, to the role of Ambassador/Founder as of January 31, 2011. She will also move into the Program Coordinator position with CCM3 Action. Connie founded Angioma Alliance after her daughter Julia was diagnosed with cavernous angiomas when only four months old. At that time, very little was known about the disease. Under her guidance over the past decade, Angioma Alliance has created a thriving peer support network, developed the International Patient Registry, provided support for research through our DNA/Tissue Bank, and raised awareness about the disease nationally and
internationally. The passion and unwavering devotion of a mother has resulted in an organization that is now the premier advocacy group for those with cerebral cavernous angiomas.

As Connie steps into the role of Ambassador, she and her 12-year-old daughter Julia are
launching a six-month road trip on January 21st to raise awareness of the disease and encourage enrollment in the Patient Registry. According to Connie, “The problem we have right now is finding people to participate in drug trials. While Angioma Alliance has a patient registry, it’s not growing fast enough. Julia and I will be traveling around the United States to raise awareness of the need for patients. We plan to visit with affected families and plant seeds to create local networks for mutual support and research
participation. The goal of Angioma Alliance is to register 1200 patients in 2012. We think we can help with this.”

Connie and Julia will first travel south from Virginia. Our website, www.angioma.org, will have information about Connie and Julia’s travels including an itinerary and updates on our blog. They would love to visit individuals and groups interested in Angioma Alliance. To arrange a visit or show your support, contact Connie via email at clee@angioma.org .

As Connie makes her transition to Ambassador, the Board of Directors of Angioma Alliance will continue to oversee the organization and build upon the excellent
foundation that Connie created over the last decade. The Board would like to extend a heartfelt thank you to Connie for founding and growing Angioma Alliance. Truly, the whole Angioma Alliance community is indebted to Connie. Without Connie, there would be no Angioma Alliance! We are grateful that Connie will continue to support and represent Angioma Alliance in her roles of Ambassador and Program Coordinator
of CCM3 Action.

2012 is also the year that you become more involved with Angioma Alliance. Please sign up for the Patient Registry today. Consider starting an Action Group, organizing a fundraiser or attending a get together with Connie. Remember, without you there can be no cure!

Best Regards,

Sara Sukalich, MD

Chair, Angioma Alliance Board of Directors

On behalf of the Board of Directors

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