Los Angeles area: Angioma Alliance sponsored

Announcements of local get-togethers and events

Los Angeles area: Angioma Alliance sponsored

Postby Connie Lee » Sun Mar 16, 2014 10:39 pm

Kristen Lewis, an Angioma Alliance Board Member and CCM1 patient, is organizing an LA area get together. Two years ago, LA-area Angioma Alliance members had an opportunity to get together at a private home in Pasadena. She wasn't yet involved with Angioma Alliance and didn't have a chance to meet those who made it. She's reaching out in the hopes of getting this group together again and building on with even more of us.

Kristen would really like to have an in person information and brainstorming session. She can share with you what we need to accomplish as a patient advocacy organization to support the researchers working toward the cure. It is a very exciting time in cavernous angioma research. A drug treatment is not far off but there are obstacles which are largely financial. Angioma Alliance is currently looking to fund some very expensive but crucial projects. She is hoping that the So. Cal. community can pool resources, form committees, discuss potential fundraising opportunities and strategize as to how to raise a lot of money together!

Please let Kristen know if you would be interested in participating in an action meeting by emailing her at kristen.lewis@angioma.org. Getting together in person will be a great way to get to know each other. As a patient, she understands the importance of a supportive community. A date has not been chosen yet but it would likely take place during the day on a Saturday.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
 
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Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Re: Los Angeles area: Angioma Alliance sponsored

Postby PhDiabla » Wed Jun 21, 2017 10:35 pm

Is this group still going?
PhDiabla
 
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Joined: Thu Jan 07, 2016 6:14 pm


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