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 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. Email us to schedule a time to talk by phone to learn how you can be more involved.

To find Community Alliances, Events, and Centers of Excellence near you, please select a state below:

If there is no Community Alliance in your area, please read below to learn about ways to form one.

local community connections

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.

Community volunteers can play a role in addressing some of the most common needs we hear:

“Are there other people with cavernous malformation near me that want to meet up?”
“Can anyone recommend a neurosurgeon in my area?”
“I wish there were a family conference or fundraising event near me.”

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.

 

 

 

 

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?

  • 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.

Next Steps

Are you ready to become an Alliance to Cure Cavernous Malformation Volunteer?

Reach out to Lindsay Ramirez at lindsay@alliancetocure.org

Financial Information for Volunteers

IRS Determination Letter (501c3)

W9 Form 2020

Updated 3.28.20