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Jandy

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2 Reviews

What I want to do

Bring awareness to CADASIL and other rare genetic diseases

What matters to me

Finding a cure for CADASIL, my rare genetic disease

What inspires me

People who make a difference

USA

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CADASIL Association
October 14, 2013

CADASIL Association is working hard to get the word out about this rare genetic disease that can often be misdiagnosed as MS/Multiple Sclerosis. Much of the association's efforts are focused in Communication, Awareness, Research, and Education.

Communication: CADASIL Association has Facebook and Twitter accounts and posts on them frequently. The newsletter EMBRACE is full of information and is published several times a year.

Awareness: CADASIL Association's posts on social media help with awareness of this condition. While we are dedicated to awareness all year round, we have a specific CADASIL Awareness Day every year on November 16th.

Research: CADASIL Association is in contact with several researchers working toward a treatment and cure, including Dr. Joseph Arboleda-Velasquez at Harvard. The association plans to fund a graduate student to help with research in 2014.

Education: CADASIL Association members attend conferences around the country to educate others in the medical community about CADASIL. We have recently created a brochure that explains the condition as a handout for medical professionals and other interested parties.

CADASIL Association is active and dedicated to CADASIL patients and families!

Ways to make it better...

If I had to make changes to this organization, I would...

...increase participation by others in the CADASIL and rare disease community.

More feedback

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Board Member

Global Genes | RARE Project
September 10, 2013

Global Genes is a distinguished leader in the rare and genetic disease community. The organization advocates for a multitude of patients, young and old, who suffer with debilitating conditions. As a patient with CADASIL, (a rare genetic neurological disease), I am a voice in the CADASIL community. By also being a member of the Global Genes community (as a committee member, Facebook group participant, blogger, etc), I am learning ways we can all come together to help everyone affected by rare and genetic diseases. As separate disease organizations, we are small. As part of Global Genes, we are huge and our voices are more readily heard. Global Genes is doing amazing things to bring awareness to rare and genetic diseases. I am proud and thankful to be part of the Global Genes community.

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Volunteer