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Los Angeles area: Angioma Alliance sponsored

PostPosted: Sun Mar 16, 2014 10:39 pm
by Connie Lee
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.

Re: Los Angeles area: Angioma Alliance sponsored

PostPosted: Wed Jun 21, 2017 10:35 pm
by PhDiabla
Is this group still going?