Microsoft word - cadasil accomplishments

CADASIL Together We Have Hope Non Profit Organization Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and CADASIL Together We Have Hope (CTWHH) was established on May 10, 2005, as a non-profit organization, which continues to work collegially with various CADASIL organizations, doctors, researchers, and groups to ensure the channels of communication are kept open among all stakeholders to find a treatment or cure for all CADASIL patients and their families. Some of CTWHH’s affiliations include: o American Brain Coalition o Brown Research, Rhode Island o CADASIL France Association, Paris France o CADASIL Research, London England o CERVCO, Lariboisière Hospital, Paris Paris, France o Coalition for Genetic Fairness o Coalition for Imaging & Bioengineering Research (CIBR) o Genetic Alliance o Loyola University Medical Center o Ludwig-Maximilians-Universität München, Germany o Memory and Aging Program, Butler General Hospital, Rhode Island o New York Lagone Medical Center o New York School of Medicine o Newcastle University, Newcastle, England o National Organization of Rare Disease (NORD) o Perelman School of Medicine, University of Pennsylvania o St. Georges Hospital, London England o United Leukodystrophy Foundation o University of Arkansas o University of Calgary, Canada o University of Glasgow, Scotland o University of Michigan Medical School Announced in April 2012 a Canadian study by the Heart and Stroke Foundation Centre of Ontario entitled “Evaluating Compromised White Matter Cerebrovascular Reactivity in Individuals with CADASIL.” Established Caregivers Support Forum in the Spring of 2012. Served in an advisory role to Canadian colleagues as they began steps to establish a CADASIL foundation. Announced the addition of Dr. Viera Saly to the Scientific Advisory Committee. As of 2012, the Scientific Advisory Committee is comprised of experts from Canada, France, the United Kingdom, and the United States. Redesigned the CTWHH website to be more user friendly as well as added more information such as public disclosures, accomplishments, and the like. Became affiliated with the Coalition for Imaging & Bioengineering Research (CIBR). Revised the CADASIL reference emergency card and brochure with vital information after approval from the Scientific Advisory Committee. Raised awareness for Rare Disease Day (February 29, 2012) with varied activities. Two patient advocates reported on their experiences at the events held in Washington D.C. Supported Expanding and Promoting Expertise in Review of Rare Treatments (EXPERRT) Act, HR 4156 and S 2281. The EXPERRT Act would make it easier for the FDA to access outside expertise needed to understand the science behind new drugs intended to treat rare diseases. Began awareness campaign to educate medical students on CADASIL. Represented CTWHH at a working luncheon in the summer of 2011 at Lariboisière Hospital in Paris, France to plan collaborative efforts with the medical team of Professor Chabriat, Dr. Herve, Professor Bousser, Mrs. Annie Kurtz, Miss Sonia Reyes and other medical professionals as well as Directors Jean Luc Airiau and Chantal Neau of the CADASIL French Association. Had an advocate physician who delivered CTWHH brochures for distribution at the April 2011 American Academy of Neurology National Annual Meeting in Hawaii. Multiple Sclerosis (MS) Association recognized CADASIL as other conditions your doctor needs to rule out April 2011. Worked with Athena Diagnostic Labs to reduce the financial impact of CADASIL testing for patients in 2011. Worked with CERVCO located in Paris, France to obtain an explanation of CADASIL in layman’s terms in 2011. Created awareness You Tube videos in 2011 titled "How to Phonetically Pronounce CADASIL", "What is CADASIL?"and "CADASIL Together We Have Hope 2011". Formed an alliance with the CADASIL France Association in 2011, which adopted CTWHH as their sister organization due to similar missions. Presented global data from the CTWHH registry (which mirrored medical data from CADASIL researchers) at the CADASIL Scientific Symposium in July 2010. Announced at CADASIL Family Conference in July 2010 that the United Leukodystrophy Foundation (ULF) and CTWHH will work side by side to do much more for CADASIL. It was also announced at the family conference that if you wish to donation directly to research, the ULF will take donations they have the ability to fund research programs since they follow NIH guidelines. A CTWHH Board Director accepted a seat on the ULF Board of Directors in July 2010. CTWHH brochure was reviewed and endorsed by the United Leukodystrophy Foundation (ULF) and the CADASIL French Association in 2010. Secured volunteer to assist with Multiple Sclerosis (MS) letter writing campaign regarding the article “MS Mimics CADASIL.” Over 180 letters (coupled with the CADASIL brochures) were sent to the Directors of MS Centers in 2010. Supported the need for an FDA-centered regulatory framework for advanced diagnostics, that is risk-based and transparent and promotes public health by facilitating timely introduction of accurate and reliable advanced diagnostic tests and providing information to patients and healthcare providers. Worked with Dr. Viera Saly in 2010, a Neurologist in British Columbia, Canada on an online CADASIL Survey/Study “How Diet Effects CADASIL.” This study was endorsed by the Vancouver Island Health Authority Research Ethics Office. Collaborated in 2010 with New York University (NYU) Medical School to recruit patients to participate in the CADASIL Study “Natural History of CADASIL: Migraine, Diagnosis and Misdiagnosis.” Assisted the ULF by securing experts in field of CADASIL to make presentations at the Scientific Symposium in July 2010. Co-hosted the first ever CADSASIL Scientific Symposium and Family Conference in the U.S.A. (in Sycamore, Illinois) with the ULF in July 2010. Wrote a letter in 2009 to The Institutional Review Board (IRB) who is in charge with reviewing all research protocols involving humans to ensure compliance with federal, state, and local regulations. The letter informed the IRB that CTWHH is in full support of this much-needed CADASIL study with New York University (NYU) Medical School “Natural History of CADASIL: Migraine, Diagnosis and Misdiagnosis.” CTWHH’s support was instrumental in having this study approved. The approved study closed July 2011 and results are pending. Supported of the Therapeutic Discovery Project Tax Credit which was included as part of the Senate Finance Committee-passed healthcare reform package. This tax credit encourages investment in new promising therapies to prevent, diagnose, and treat acute and chronic diseases. Worked with the Coalition for Genetic Fairness and other nonprofit organizations to get GINA passed in 2008. On April 24, the Senate passed the bill by a vote of 95-0 and the House passed the bill by a vote of 414-1 prior to President Bush signing the bill into law on May 21, 2008. The act protects Americans against discrimination based on their genetic information when it comes to health insurance and employment. Assisted Dr. Tiffany Simmons, DMD (of the University of Nevada School of Medicine) in recruiting participants for a brief CADASIL Dental Study in 2008. Added information to the CTWHH website on brain donations upon receipt of information from medical researchers in 2007. Contacted by the National Headache Society in 2007 to place CADASIL podcast on the website. Initiated a letter writing campaign in 2006-2007, with addresses published in the newsletter, for everyone to write to various media outlets (such as ABC News, 20/20, etc.) to raise awareness for CADASIL. Created a Medical Professional’s Page on the CTWHH website in 2006 as an effort to educate the medical community on this rare disease. Established a toll free number (1-877-519-HOPE) in 2006 for patient support. Developed and implemented an awareness campaign by asking patients and families to register with the American Stroke Association to highlight existence of CADASIL in 2006. CTWHH received a letter from the ASA acknowledging the disease and provided opportunities to include CADASIL on their website. Created an online forum in 2005 for patients and caregivers to network, communicate, and make announcements. Worked closely in 2005 to recruit patients for the Donepezil (Aricept) CADASIL Study conducted in the United States, Canada, England, and Scotland by with Eisai/Pfizer. Represented CADASIL TWHH at a National Organization of Rare Disease (NORD) meeting in Rockville, Maryland in 2005. This conference was a collaborative effort of the National Institutes of Health, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the American Society for Human Genetics, the American College of Medical Genetics, the Genetic Alliance, the Society for Inherited Metabolic Disorders, the National Organization for Rare Disorders, and Emory University Department of Human Genetics to address the growing public need for improvement in availability, accessibility, and quality of genetic and other diagnostic laboratory testing for rare diseases and conditions. Developed web page on how to file for disability in 2005. Contacted by social security representative in 2007 who complimented CTWHH for the website's information and gave tips to assist CADASIL patients in filing for disability with the Social Security Administration. Thanked by lawyer in 2008 as client was approved for disability after following CTWHH suggested guidelines (having been denied twice previously). Met with Dr. Gregory Pastores (of New York University Medical Center) and associates in 2005 to begin planning for a CADASIL conference. Began collaborative efforts with Jack Shields and the UK CADASIL Trust in 2005. Since 2005, have secured top-notch CADASIL specialists from France, the United Kingdom, and the United States to serve on our Scientific Advisory Committee. CTWHH website certified by HON Code in 2005. “Health On the Net Foundation (HON) Code certification is an ethical standard aimed at offering quality health information. It demonstrates the intent of a website to publish transparent information. The transparency of the website will improve the usefulness and objectivity of the information and the publishment of correct data. Created in 1995, HON is a non-profit, non-governmental organization, accredited to the Economic and Social Council of the United Nations.” Sought out since 2005 by the medical community to place information on the website. Since 2005, CTWHH as a nonprofit has disseminated the latest information (studies, testing sites, new articles, newsletters, research, educational materials, etc. as well as a database for confirmed cases) through the organization’s website. Created the CADASIL Registry in 2005 to notify registrants of current studies, research, announcements, etc. Represented CTWHH at the ULF conference in 2005. Assisted with the breakout session on CADASIL. Developed a physician’s locator in 2005 for patients and families upon request of CADASIL community members. With volunteer participation and reviews conducted by the Scientific Advisory Committee, developed and distributed a CADASIL Emergency Card in 2005. The card contains vital medical information. Recognized by the National Organization for Rare Disorders (NORD) in 2005, a 501(c)(3) organization which is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Changed our domain name to www.cadasilfoundation.org in September 2005 and secured a Recongized by the IRS as a recognized 501(c)(3) non-profit organization. Our EIN/ Federal Tax ID # is 20-2838602.

Source: http://cadasil.net/Accomplishments.pdf