Local Community Connections

Community groups around the country are organizing grassroots fundraising, support, education, and awareness initiatives in their local communities to support the Alliance to Cure Cavernous Malformation mission.

It is only with friends like you that we can continue to expand our mission! We are a volunteer-driven, rare disease organization creating a nationwide community bound together by our drive to CURE CCM!

If you would like to connect with others in your community affected by cavernous malformation and you would like to support the mission of Alliance to Cure Cavernous Malformation, we are here to support you every step of the way.

Send us a message at lindsay@alliancetocure.org to chat about how you can help!


Our Community

Volunteers within the Cavernous Malformation community regularly plan fundraising events, support activities, and work to improve care through interactions with medical professionals all in support of the mission of Alliance to Cure Cavernous Malformation.


“If you want change to happen, you have to be part of making it happen. A cure starts with us.”

Julie DeMichiel, Patient and Volunteer

Mission Statement

Community Volunteers are dedicated to informing, supporting, and empowering those affected by cavernous malformation and driving efforts toward better treatments and a cure.

Regional zoom groups

We offer several Regional Zoom Collaboration Groups for individuals affected by Cavernous Malformation. These groups serve as dynamic platforms to plan in-person activities and fundraisers within specific regions. Geared towards fostering local engagement, these sessions are not support groups but aim to unite regional members, strategize events, and coordinate fundraising efforts. Join us in making a meaningful impact on our local rare disease community! Email Linda@AllianceToCure.org for more information about regional groups.

How We Work Together

We are here to support our community volunteers every step of the way so that we can support our mission together.

Alliance to Cure Cavernous Malformation will:

  • Provide staff support, as deemed appropriate, to ensure the success of our volunteer activities.
  • Support efforts to train and recruit new volunteers.
  • Develop and make available high-quality, medically-sound and useful educational and public awareness materials.
  • Identify and implement potential opportunities for collaborative revenue generation efforts, including nationwide campaigns and corporate relationships.
  • Maintain registered charity status in the local community.

How can Volunteers Help?

  • Start by completing our volunteer interest form. 
  • Serve as a resource for newly diagnosed patients.
  • Deliver support and education programs which can include maintaining a social media presence, organizing informal adult or family meetups, disseminating patient education and resource information, and engaging local health care providers and the general public.
  • Organize conferences, serve as ambassadors to nearby Alliance to Cure Cavernous Malformation Centers of Excellence and Clinical Centers, engage in legislative advocacy, or participate in other mutually agreed-upon activities.
  • Engage in fundraising efforts both large and small.

For more information about volunteer opportunities, reach out to Lindsay Ramirez at lindsay@alliancetocure.org

Financial Information for Volunteers

IRS Determination Letter (501c3)

Updated 3.28.20