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September 11, 2014

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September 11, 2014

Currently I am carrying out biomedical research investigating CADASIL disease under the guidance of Dr Joeseph Arboleda. My first interaction with the CADASIL association was in June 2013 when I attended the associations’ conference in Boston.

The Boston conference was a unique experience
for me as it was the first scientific conference that I have been to that was patient lead. The conference not only helped me to further empathise with people who have CADASIL but inspired me to come back to America, to work under Dr Joeseph Arboleda on this rare condition. As such I applied for the CADASIL associations 10 week summer fellowship program which afforded me the opportunity to carry out research into blood based biomarkers of the disease. So far we have had promising results and we are looking to publish them with the next few months.
July 4, 2014

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July 4, 2014

The CADASIL Association is not only fighting for research and a cure, for this little known genetic disease, in an array of different ways, but is helping both patients and family/caregivers to be able to cope with their huge number of uniquely varied issues on a day to day basis. Additionally, they are striving for mental, emotional and physical attention and treatment of both, the patient and caregiver. It is critical that both be considered, and CADASIL Association is accomplishing this with Facebook support, interaction with patients on Facebook, email and messaging patients and caregivers online, teleconferences, along with a variety of other supportive measures. For every person with undetected CADASIL, an entire family’s generations are at risk. With all children that follow to have a 50-50 chance of inheriting it, we need the public to be educated about CADASIL, now…not after they have children. They need to be able to make an informed decision about having children if they have CADASIL. In addition that undetected person’s siblings and parents may also be carrying the genetic disease. One detected person represents his/her entire family and generations to come. It is imperative that the info gets out to not only the medical arena, but to the common public where symptoms can be recognized and patients step forward for diagnosis. Then the medical community can begin to assemble better databases and accurate information to build on for research. The more informed individuals that can recognize their own symptoms the faster the medical field will be exposed to it, and physicians will begin informing themselves in order to treat their patients. Then they will have an accurate source of information to refer to. The CADASIL Association is working to make this happen. CADASIL is a horrific disease with very few answers, and no cure. The Association is dedicated to bringing CADASIL to public awareness, which in turn brings to the medical community. Funding is based strongly on the numbers of people presenting CADASIL. Where none of us want even one more diagnosis of someone having CADASIL, it is still going to happen. To be diagnosed, along with others who are being voluntarily diagnosed, perhaps the expanded funding will find a cure during our generation.

Ways to make it better...

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

Have a larger database or point of patient resource of patients and of their immediate family. Personal history of each CADASIL patient. Database having ability to possibly see a larger picture with this much info. Comparison study as result of database info.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

October 23, 2013

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October 23, 2013

I am familiar with various aspects of the CADASIL disease and know individuals who suffer with it. But, not until I attended the Boston Conference on CADASIL this past Jun 27-29, did I get to experience the CADASIL Association in action. Friends, families and sufferers from all over the U.S. were able to come together in a relaxed setting to listen to experts in the field talk about CADASIL's history, present place in the medical arena and what lies ahead for those involved. The distinguished panelists from Harvard Univ., Brown Univ., and Massachusetts General Hospital provided valuable information and allowed copious time for questions and answers throughout the day. Break-out sessions were also organized so small groups could discuss their situations and ideas which made everyone feel "they are not in this alone." Without the devoted time and hard work of the Association's board members and volunteers, CADASIL would not have the exposure it has begun to have to the public. With this exposure, so many people have come forward with questions about their misdiagnosis or the cause for their unexplained symptoms. They need everyone's help in providing time and money to continue the fight for a cure.

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Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

October 16, 2013

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October 16, 2013

The CADASIL Association relies on a volunteer Board of Trustees to carry out the operations of the organization. In additional to an extraordinary Board of Trustees, we have a group of awesome and talented volunteers that donate their valuable time to provide the resources necessary to accomplish our goals. The CADASIL Association is growing by leaps and bounds. There is much work to be accomplished and volunteers are always needed. Please visit our website at www.cadasilassociation.org for more information.

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

October 15, 2013

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October 15, 2013

Cadasil Association has made great strides in getting information out to the public about the little known genetic disease CADASIL. Having attended both the Salt Lake CADASIL Conference in September 2012, and the Boston CADASIL Conference in June, 2013, I have been provided with information on the latest medical progress in diagnosing CADASIL, and the hope of a future patient registry and potential future treatment. The Association is full of dedicated doctors, researchers, and hard working Board members. As a non-symptom CADASIL genetic carrier, the Association provides me and all CADASIL patients and their families with life-changing and timely knowledge that would not be available otherwise.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

October 14, 2013
2 people found this review helpful

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October 14, 2013
2 people found this review helpful

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

September 17, 2013

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September 17, 2013

CADASIL Association is a newly formed 501(c)(3) dedicated to bringing awareness about CADASIL to the public and medical community. CADASIL Association is staffed solely by volunteers. CADASIL Association aims to unite patients, families, the medical community and all others touched by this rare genetic disease, to help create feelings of companionship and unity while forming a strong coalition as we “envision the cure and embrace the challenge”. Since its inception less than one year ago, the CADASIL Association has hosted a family Conference in Boston, MA. The Scientific Director of the Conference was Dr. Joseph Arboleda-Velasquez MD., PHD., an NIH funded investigator working at Schepens Eye Research Institute/Harvard Medical School. He brought together a distinguished panel that included Dr. Anand Viswanathan (Neurologist, Massachusetts General Hospital), Dr. Stephen Salloway (Neurologist, Brown Medical School and Butler Hospital), Dr. Dev Batish (Chief Director, Genetics, Athena Diagnostics), Dr. Adrian Ivinson, (Director, Harvard NeuroDiscovery Center), Peter S. Saltonstall (President and CEO of NORD), Dr. Rosa Davidsdottir, (Neuropsychologist, Mass General Hospital), Dr. Marcie Glicksman (Co-Director Lab for Drug Discovery, Harvard NeuroDiscovery Center), and Diane Lucente, M.S. (Genetics Counselor, Mass General Hospital). The speakers gave informative presentations and the panelists answered all question asked by the audiencce. CADASIL Association will continue to spread awareness through www.cadasilassociation.org

Ways to make it better...

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

Build a larger, stronger volunteer base of patients, the medical community and others touched by CADASIL.

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?

A lot

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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