February 2013 - Huntington's Disease Society of America

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“Bridges of Hope” HDSA Michigan Chapter -10- The Michigan Chapter's Patient and Family Services Committee presents The Caregiver's Corner. WHO CARES ??? WE DO !!! THEY DO !!! READ ON !!! Friends, we will print caregiver's stories that will show you that "THEY DO CARE". You will agree that ""THEY DO INDEED CARE" and are doing fantastic jobs as Caregivers. Our aim in future Newsletters is to bring you stories from people who really care and are doing marvelous jobs as Caregivers for their loved ones. Please call us, e-mail us, fax us, or write us with your stories so we can publish them in future Newsletters. 800- 909-0073, hdsami@att.net, fax 989-832-4170. HDSA Michigan Chapter, 1174 James Savage Road, Midland MI ________________________________________________________________________________________ HD Living Positive Group Invites Participants to Join! Individuals who test positive through Pre-Symptomatic Testing Programs for Huntington Disease and those living-at-risk often feel isolation and uncertainty about their future. Traditional HD Support Groups often are inadequate to address the immediate needs of these individuals who are coping with the challenge of deciding about whether to be tested or how to live in relationships at work and in their personal lives after testing positive. These individuals often are not showing any clinical symptoms. In 2011 an HD Living Positive Group was started in Grand Rapids Michigan to meet this need for those who test positive and/or are living-at-risk. The HDSA Michigan Chapter provides financial support for a monthly group that meets at a private psychotherapy practice location. A brochure was developed to include the topics for discussion. The facilitator is a clinical social worker and a certified genetic counselor. A total of 18 individuals have attended one or more groups. Structure for the meetings includes a talking stick for introductions and for closing. Confidentiality is discussed to provide a trusting environment for everyone to share their personal concerns. Current newsletters and other educational materials are provided. Some of the topics discussed include how to "live positive" following test results, how to prolong the onset of symptoms, the benefits of meditation and exercise, the use of alternative therapies, the challenge of losing the independence of driving, who to tell and how to tell of test results, how to prepare young children and adolescents for HD in their lives, the difference between unawareness and denial, how to navigate the dual roles of being gene positive and a caregiver, how to support one another, and how to deal with the secrecy and stigma of HD. For more Information go to this website and click on Brochure: www.kathleendelp.com or call Kathleen at 616-581-3085 ________________________________________________________________________________________ Huntington's Disease Advocates Celebrate Stem Cell Research Funding: A Step Closer to Clinical Trials The California Institute for Regenerative Medicine on July 26, 2012 Awards $18.9 Million for Huntington’s Disease Research to UC Davis In what scientists and patients advocates say is an exciting development in the area of Huntington's disease (HD) research, California's stem cell agency today approved a grant proposal worth nearly $20 million that is designed to propel researchers at UC Davis Health System toward preparing for the first FDA-approved cellular therapy for HD patients. The researchers plan to use a novel therapy that could restore the health of brain cells damaged by a hallmark of the devastating neurodegenerative disease, the mutant huntingtin (htt) protein. With a green light from the governing board of the California Institute for Regenerative Medicine (CIRM), Vicki Wheelock, clinical professor of neurology and director of the HDSA Center of Excellence at UC Davis, and Jan Nolta, professor of internal medicine and director of the UC Davis Institute for Regenerative Cures, are leading a research project that plans to infuse specially engineered mesenchymal stem cells into the brains of Huntington's disease patients. The stem cells, which will be customized to secrete brain-derived neurotrophic factor (BDNF),
“Bridges of Hope” HDSA Michigan Chapter -11- are expected to restore the health of brain cells damaged by the mutant htt protein. This therapy has been shown to be effective in animal models of HD. The planned UC Davis trial for treating HD will target earlier phases of the disease, when patients are younger and before the illness's full impact takes its toll. Vicki Wheelock said that mesenchymal stem cells represent remarkably effective delivery vehicles because they move well through tissue and can produce high levels of growth factor for uptake by the damaged neurons. In preparation for its phase I clinical trial with HD patients, the Huntington's disease team is carefully testing its proposed cellular infusion therapy for safety and effectiveness. "The delivery of brain-derived neurotrophic factors via mesenchymal stem cells significantly reduces behavioral deficits in HD mice back to nearly normal levels," said Nolta, who has been working with Wheelock for the past several years in conducting the research for their successful grant proposal to CIRM. "We are doing further work to ensure that the proposed therapy will be safe and effective as we prepare for a clinical trial." For patients and their families, who have been tireless advocates for stem cell research, a multimillion dollar grant and the promise of a phase I clinical trial are breakthrough accomplishments in the fight to overcome Huntington's disease. "It's hard to put into words what this stem cell funding truly means for families like mine," said Judy Roberson, who lost both her 51-year-old husband and brother-in-law to the disease, and then went on to provide the impetus for establishing a multidisciplinary HD clinic at UC Davis. "The determination and dedication of Dr. Wheelock and Dr. Nolta, combined with CIRM's support, gives us the edge we need to overcome this terrible disease." Roberson and other patient advocates helped provide funding support to UC Davis at a crucial point in the university's stem cell research for HD. Also, a pilot grant from the university's Clinical and Translational Science Center, along with donations from two non-profit organizations - Team KJ and the Deshalamar Foundation - enabled Wheelock and Nolta to conduct the preliminary biosafety studies that were needed before the state stem cell agency would consider their Disease Team grant proposal. Generous private philanthropy from the Roberson and Charles Pue families provided early support to the HD clinic at UC Davis, which is now a hub for clinical care and research trials and has followed over 300 patients with the disease. To develop the proposed therapy to be used in the clinical trial, basic scientists and clinicians who comprise the Huntington's disease team have met weekly for the past several years. Nolta noted that the team taps into expertise from throughout UC Davis, including the university's health system leadership, led by Claire Pomeroy, vice chancellor for Human Health Sciences and dean of the School of Medicine, and Fred Meyers, the school's executive associate dean. Wheelock credited her team's membership in the Huntington Study Group for developing expertise in conducting human HD research studies. "We are also consulting with national and international Huntington's disease experts," said Nolta. "But most importantly, the Huntington's disease community and patient advocates, who already have helped us make great strides through their philanthropy and participation in observational clinical trials, will continue to provide incredible inspiration for all of us who are working to treat this heartbreaking disease." UC Davis is playing a leading role in regenerative medicine, with nearly 150 scientists working on a variety of stem cellrelated research projects at campus locations in both Davis and Sacramento. The UC Davis Institute for Regenerative Cures, a facility supported by the California Institute for Regenerative Medicine (CIRM), opened in 2010 on the Sacramento campus. This $62 million facility is the university's hub for stem cell science. It includes Northern California's largest academic Good Manufacturing Practice laboratory, with state-of-the-art equipment and manufacturing rooms for cellular and gene therapies. UC Davis also has a Translational Human Embryonic Stem Cell Shared Research Facility in Davis and a collaborative partnership with the Institute for Pediatric Regenerative Medicine at Shriners Hospital for Children Northern California. All of the programs and facilities complement the university's Clinical and Translational Science Center, and focus on turning stem cells into cures. Dr. Gary Dunbar’s Lab at Central Michigan University conducted earlier Stem Cell research as a basis for this grant.
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February 2013 - Huntington's Disease Society of America

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