Meet Your Neighbors 2009 Archive
December 21, 2009: Statewide Parent Advocacy Network of New Jersey
 The vision of the Statewide Parent Advocacy Network is that all families will have the resources and support they need to ensure that their children become fully participating and contributing members of our communities and society. SPAN NJ focuses on the whole child and family with the motto Empowered Parents: Educated, Engaged, Effective! With 50 full and part-time staff, SPAN NJ reaches over 100,000 parents and professionals via telephone or in person technical assistance, website, and hard copy publications each year.
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December 14, 2009: PKS Kids
 PKS Kids is a non-profit that was founded by parents of children with PKS in 2006. The organization aims to promote research, provide education and raise awareness within the medical community to ensure early diagnosis of children with Pallister-Killian Syndrome while also providing resources and support to families, therapists, and caregivers. PKS Kids is supported by over 100 members.
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December 7, 2009: The National Marfan Foundation
 The National Marfan Foundation, founded in 1981, seeks to improve the quality of life for individuals and families affected by Marfan syndrome and related disorders. Twenty-four full- and part-time staff educate patients, family members, and the health care community about the syndrome; advocate and fund clinical and molecular research into the syndrome’s detection and treatment; and provide national support services for patients and relatives to share experiences and improve their medical care. The National Marfan Foundation regularly reaches 40,000 patients, families, professionals, and supporters.
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November 30, 2009: Foundation for Informed Medical Decision Making
 Foundation for Informed Medical Decision Making is a non-profit organization advancing research, policy, and clinical models that assure patients are fully informed and involved in decisions that affect their health and well-being. The goal of the organization is to provide expert genetic counseling to patients and providers nationwide. In addition they work to help patients, providers, and organizations harness the power of genetics to achieve the promise of personalized healthcare
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November 23, 2009: ItRunsInMyFamily.com
 ItRunsInMyFamily.com was founded in 2008 with the idea to create a web-based tool that patients could use to create their family health pedigree to share with their doctor. Their mission is to increase the use of family health history by patients and providers. The organization will be holding events for National Family Health History Month in November.
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November 16, 2009: The National Psoriasis Foundation
 The National Psoriasis Foundation, founded in 1968, aims to improve the quality of life of people with psoriasis and psoriatic arthritis. The Foundation serves more than one million people through membership, community-based programs, and a website. CCFHH...
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November 9, 2009: National Society of Genetic Counselors
 Founded in 1978, the NSGC aims to advance the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services. The Society's vision is to to be the leading voice, authority and advocate for the genetic counseling profession. The 28th Annual Education Conference will be held November 12-15, 2009 in Atlanta, GA.
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November 2, 2009: American Public Health Association
 The American Public Health Association is the oldest, largest and most diverse organization of public health professionals in the world and has been working to improve public health since 1872. The Association aims to protect all Americans and their communities from preventable, serious health threats and strives to assure community-based health promotion and disease prevention activities and preventive health services are universally accessible.
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October 26, 2009: Disruptive Women in Healthcare
 Disruptive Women in Health Care serves as a platform for provocative ideas, thoughts, and solutions in the health sphere. The project was conceived of and is owned by Amplify public Affairs. The focus of the blog is on encouraging the voices of women, though men are also welcome to share their thoughts. Sharon Terry, President and CEO of Genetic Alliance, is a founding Disruptive Woman.
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October 19, 2009: American Society of Human Genetics (ASHG)
 ASHG, founded in 1948, is a professional society serving research scientists, health professionals, and the public by providing forums to by providing forums to share research results at annual meetings and in The American Journal of Human Genetics, advance genetic research by advocating for research support enhance genetics education by preparing future professionals and informing the public, and promote genetic services and support responsible social and scientific policies. The organization has nearly 8,000 members with the goal to translate new ideas into improved clinical practice.
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October 12, 2009: CETT Program for Rare Genetic Diseases
 The CETT Program for Rare Genetic Diseases was developed by the NIH Office of Rare Diseases Research with goals to promote new test development for rare genetic diseases, facilitate the translation of genetic tests from research laboratories to clinical practice, establish collaborations and provide education about each rare genetic diseases; related genetic research and clinical impact of testing, and support the collection and storage of genetic test result information in publicly accessible databases to leverage the information into new research and new treatment possibilities.
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October 5, 2009: Gluten Intolerance Group of North America
 The mission of the Gluten Intolerance Group of North America is to provide support to persons with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, in order to live healthy lives
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September 28, 2009: Hereditary Spherocytosis Support Group
 The Hereditary Spherocytosis Support Group was founded to promote awareness and discover and facilitate a cure for the condition.
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September 21, 2009: The Stennis Foundation
 The Stennis Foundation raises awareness of the Leukodystrophies and raises funds for Leukodystrophy research. The organization was founded after Dr. Sam Stennis was diagnosed with adult-onset Metachromatic Leukodystrophy and no treatment options were available to help him. Founder Trish Knight will complete a 10 mile Leukodystrophies Awareness Walk on September 26 to get one step closer to a cure.
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September 14, 2009: Health Resources and Services Administration (HRSA)
 HRSA is the nation's access agency - improving health and saving lives by making sure the right services are available in the right places at the right time. The Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable. Comprising six bureaus and 12 offices, HRSA provides leadership and financial support to health care providers in every state and U.S. territory. HRSA grantees provide health care to uninsured people, people living with HIV/AIDS, and pregnant women, mothers and children. They train health professionals and improve systems of care in rural communities. HRSA oversees organ, tissue and blood cell (bone marrow and cord blood) donation and vaccine injury compensation programs, and maintains databases that protect against health care malpractice and health care waste, fraud and abuse. Since 1943 the agencies that were HRSA precursors have worked to improve the health of needy people. HRSA was created in 1982, when the Health Resources Administration and the Health Services Administration were merged
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September 7, 2009: Syndromes Without A Name (SWAN) USA
 SWAN USA's mission is to provide support, information, and connections to families of children with undiagnosed medical disorders. By promoting programs to increase awareness, respect, understanding, and improve the quality of life of these children, SWAN USA hopes to empower families to create a safe environment and protect the welfare of those living with an undiagnosed disorder.
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August 31, 2009: Southeast NBS & Genetics Collaborative (SERC)
 The Southeast NBS & Genetics Collaborative (SERC) is one of seven Health Resources and Services Administration Regional Collaborative Groups and is comprised of the following southeastern states and territories: Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Puerto Rico, and the US Virgin Islands. SERC is devoted to translating research into practical health care services and systems to improve the health and quality of life of individuals with heritable disorders through collaboration and partnership. The Collaborative has ongoing projects related to medical home, transitioning, laboratory performance, emergency preparedness, and long-term follow-up data collection, and has an active Consumer Alliance.
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August 24, 2009: Associação Brasileira dos Portadores da Doença de Gaucher (Gaucher Brazil)
 Located in Rio de Janeiro, Brazil, Gaucher Brazil has the mission of helping patients with Gaucher disease to receive quality treatment from the government. Along with this, they encourage parents to understand how to raise a child with Gaucher disease and encourage doctors to learn more about this condition so as to make the correct diagnosis. Gaucher Brazil's principal goal is to keep in touch with the government at all times in order to show how important treatments are for patients. In November, all of the local Gaucher Associations will be united to discuss state problems and solutions.
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August 17, 2009: The Foundation for Prader-Willi Research
 The Foundation for Prader-Willi Research is an advocacy organization founded in 2003 by parents of children with Prader-Willi syndrome who were interested in accelerating research for PWS. The Foundation seeks to eliminate the challenges of Prader-Willi syndrome through the advancement of research and holds the membership of approximately 350 families. To date, the FPWR has committed more than $1,000,000 in supporting PWS research grants.
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August 3, 2009: Amyloidosis Support Group, Inc.
 Amyloidosis Support Group, Inc. was founded in 2005 to support Amyloidosis patients and caregivers. Their goals are to help set up and maintain peer group Amyloidosis support meetings, to raise funds through donations, and to help the groups to be self-sustaining. The Group has over 430 members on the online group and holds 21 support group meetings in different cities. They also operate 24/7 hotline to provide incessant support for those who are affected by this insidious disease.
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August 3, 2009: Cystinosis Research Network
 Located in Lake Forest, IL, Cystinosis Research Network is a nonprofit advocacy organization committed to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. Its vision is the discovery of improved treatments and ultimately a cure for cystinosis. The organization was started by parents of children with cystinosis over a decade ago, and has now evolved into a volunteer-comprised group that communicates with about 2500 individuals. The Network recently hosted its biannual Family Conference in July, 2009.
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July 27, 2009: Fetal Hope Foundation
 Fetal distress and syndromes take the lives of more than 200 babies a day and affect 800,000 pregnancies per year in the U.S. alone. The Fetal Hope Foundation's mission is to provide support and information, fund research, increase awareness, and serve as an outlet for medical information related to fetal distress and syndromes. The foundation was born from the TTTS Race for Hope, which started in 2004 in Denver, Colorado. Within two years the race reached more than one million people and raised over $50,000. In 2006, the Fetal Hope Foundation was formally founded. Today the organization regularly communicates with 15 top fetal care centers and has over 1000 supporters.
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June 29, 2009: Lymphatic Research Foundation
 Established by a Wall Street attorney, Lymphatic Research Foundation seeks to advance research of the lymphatic system and to find the cause of and cure for lymphatic diseases, lymphedema, and related disorder. LRF communicate with approximately 10,000 individuals and organizations. Since its inception LRF has established an impressive track record of establishing a first ever Endowed Chair of Lymphatic Research and Medicine at Stanford University School of Medicine and playing a critical role in the establishment of a permanent Trans-NIH Coordinating Committee on the Lymphatic System. LRF's Inaugural Awards Gala in 2007 was extremely successful and raised half a million dollars. The Organization will celebrate its 10th anniversary with another Inaugural Awards Gala in May 2009.
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June 22, 2009: NJ & American Self-help Group Clearinghouse
 The NJ & American Self-Help Group Clearinghouses helps people find, form and run their own peer support, learning, and advocacy communities. The American Clearinghouse boasts an extensive database that lists more than 1,100 national, international, model, and online self-help support groups, which is used by HealthWise, WebMD, MedHelp, and others. Since its inception in 1979, Clearinghouse has published a nursing textbook chapter on the need for nurses' understanding and tapping of self-help groups, as well a self-help group leaders' presentations in a professional journal. The NJ Clearinghouse provides contacts for local NJ resources through a toll-free hotline.
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June 15, 2009: AccessDNA
 AccessDNA is an online resource for genetic information dedicated to helping people better understand their genetics and obtain appropriate, comprehensive information on hundreds of genetic conditions, tests, and testing providers. AccessDNA.com allows consumers to assess their own genetic risks; get expert advice from a Board Certified Genetic Counselor; and connect with others to share and discuss a variety of issues on genetics.
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June 8, 2009: ScanGrants
 ScanGrants is a public service listing of grants and other funding types designed to facilitate the search for funding sources to enhance individual and community health. Another aim of ScanGrants is to assist foundations and other funders in circulating news of their funding opportunities so as to ensure a broad pool of talented, deserving applicants. The funding sources listed are of interest to anyone associated with the health field - medical researchers, social workers, nurses, students, community-based health educators, academics and others. The ultimate aim is the advancement of science. Submit your funding opportunity.
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June 1, 2009: Brookdale
 Brookdale University Hospital and Medical Center is a teaching medical facility that is located in Northwestern Brooklyn, New York. The hospital was founded in 1920's to serve the growing immigrant population in the area. They work to improve care, increase education, knowledge, outreach and advocacy for sickle cell disease. According to this mission, they are preparing various events for this September, the national Sickle Cell Awareness Month. These events include A Back to School Jamboree, Outreach at hospitals and libraries, blood drive, and grand rounds.
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May 25, 2009: IsoDicentric 15 Exchange, Advocacy, Support (IDEAS)
 IDEAS (IsoDicentric 15 Exchange, Advocacy, Support) provides family support and promotes awareness, research and targeted treatments for chromosome 15q duplication syndrome. IDEAS hopes to find targeted treatments so that affected individuals can live full and productive lives. The organization began as a small group of affected families, but is now a network of more than 400 families working towards a better tomorrow for children with chromosome 15q duplication syndrome. The next IDEAS conference, called Full Steam Ahead, takes place June 25-27, 2009. IDEAS (IsoDicentric 15 Exchange, Advocacy, Support) provides family support and promotes awareness, research and targeted treatments for chromosome 15q duplication syndrome. IDEAS hopes to find targeted treatments so that affected individuals can live full and productive lives. The organization began as a small group of affected families, but is now a network of more than 400 families working towards a better tomorrow for children with chromosome 15q duplication syndrome. The next IDEAS conference, called Full Steam Ahead, takes place June 25-27, 2009.
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May 18, 2009: Alpha-1 Kids
 Alpha-1 Kids is a home based organization that was organized in 2006, to meet a rising need for support. They proudly send representatives to the Alpha-1 conferences, and are working to develop a model delivery system that provides medical and psychosocial support for families throughout the US whose children are diagnosed with Alpha-1. They are collaborating with CliC and the Alpha-1 Association to provide additional support to young parents and their pediatricians. Their unique and innovative fundraisers have included a national virtual golf tournament./p>
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May 11, 2009: Human Genetics Program at Sarah Lawrence
 In 1969, in response to the development of prenatal diagnostic techniques, a Human Genetics program was founded at Sarah Lawrence College. It was the first program of its kind in the United States and remains the largest. The program provides an interdisciplinary and comprehensive education in human genetics for professionals in order to improve health and healthcare for individuals, and has trained half of the nation's genetic counselors. Activities and accomplishments include a newsletter called Gene Scene and a genetic counseling student exchange with Jordan University of Science and Technology.
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May 4, 2009: Parent Project Muscular Dystrophy (PPMD)
 Parent Project Muscular Dystrophy (PPMD) seeks to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, education, advocacy, and compassion. Founded in 1994, PPMD has offices in Middletown, OH and Fort Lee, NJ; a staff of 10 serves roughly 5,000 member families. In 2001, the passage of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act gave families additional resources and hope for a cure. Four years later, in 2005, PPMD joined Genetic Alliance and the Access to Credible Genetics Resources Network to establish standards for accurate and credible information on single-gene disorders.
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April 27, 2009: DNA Direct
 DNA Direct delivers guidance and decision support for genomic medicine to patients, providers and payors. The company's comprehensive clinical programs are unique to genomic medicine, and combine proprietary technology with genetic expertise, including a national call center of genetic experts, web-based applications, and educational resources and training. The company is based in San Francisco. For more information, visit www.dnadirect.com
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April 20, 1009 Canadian Fabry Association
 The Canadian Fabry Association promotes the better understanding, management and treatment of Fabry disease; supports research; raises awareness; and coordinates and increases the facilities available for diagnosis, consultation and treatment of those suffering from Fabry disease. The 100% volunteer organization brought together the Federal and Provincial Governments and two manufacturers to develop a three-year funding agreement for access and reimbursement of enzyme replacement therapy for patients in Canada with Fabry disease.
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April 13, 2009: Amicus
 Amicus Therapeutics, founded in 2002, is a biopharmaceutical company developing oral therapeutics known as pharmacological chaperones for the treatment of a range of human genetic diseases. Amicus' reach is global; the company regularly interacts with key opinion leaders in the lysosomal storage disease community, including advocates, physicians, clincial and basic researchers, study coordinators, policymakers, and other stakeholders throughout the drug development process. As a company, Amicus believes in teamwork, in respect for each individual's contribution, and in constantly building momentum in the fight against human genetic diseases.
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April 6, 2009: The Donaghue Foundation
 The Patrick and Catherine Weldon Donaghue Medical Research Foundation provides grants for medical research of practical benefit. It focuses on initiatives to strengthen research on health issues, to promote research leadership, and to put new knowledge to work for public benefit. Sharon Terry, President & CEO of Genetic Alliance, will be a keynote speaker at the Foundation's BeyondEureka! Conference, April 29.
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March 30, 2009: Breast Cancer Network of Strength
 Founded by two patients in 1978, Breast Cancer Network of Strength(tm) (formerly known as Y-ME) provides immediate emotional relief to anyone affected by breast cancer through the "YourShoes(tm)" 24/7 breast cancer support center, which includes the country's only toll-free breast cancer hotline staffed exclusively by breast cancer survivors.
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March 23, 2009: Miami Institute for Human Genomics
 The Miami Institute for Human Genomics (MIHG), part of the University of Miami Miller School of Medicine, seeks to discover and explain the genetic influences on human health and to pioneer the application of this knowledge to the diagnosis, intervention, and prevention of disease. Diseases studied at MIHG include Alzheimer's, Parkinson's, autism, eye disease, cardiovascular disease, and multiple sclerosis. MIHG consists of five integrated centers: Genetic Epidemiology and Statistical Genetics, Genome Technology, Human Molecular Genetics, Genomic Medicine, and Models of Human Disease
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March 16, 2009: NE Dubowitz Syndrome Family Support
 NE Dubowitz Syndrome Family Support is an online support resource for those affected by the disorder. Founded in 1995 by the mother of a child with Dubowitz Syndrome who could find no information about the condition, the group is committed to promoting the accessibility of online information and support for all genetic disorders. There are fewer than 200 families worldwide with Dubowitz Syndrome; this organization regularly reaches 85. An annual 'Dubowitz Day' is held every year at Boston Children's Hospital for patients and their families, and initiatives to identify the gene and get a definitive diagnosis for the condition are high priorities.
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March 9, 2009: Center for Behavioral and Decision Sciences in Medicine
 The Center for Behavioral and Decision Sciences in Medicine brings together behavioral scientists and clinicians, from a wide array of fields in social science and medicine, to research health behavior and decision making, with the goal of improving health care policy and practice. A joint initiative of the University of Michigan and the Veterans Affairs Medical Center, the Center recently began genetics/genomics research for the VA medical center looking at VA patients' and families' attitudes and behaviors around genetic tests.
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March 2, 2009: In Need of Diagnosis Inc. (INOD)
 Undiagnosed conditions tax the limits of modern medicine, and individuals with an undiagnosed medical condition need healthcare and research support. In Need of Diagnosis Inc., (INOD) was created to call attention to these patients and provide they support they need, and operates under the premise that even people with medical expertise need support when coping with an undiagnosed condition. The organization is currently lobbying to create a board certification in diagnosis and working to provide information to patients who do not have easy access to the traditional channels. In Need of Diagnosis Inc., (INOD) shows patients that positive change can come about in the medical system.
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February 23, 2009: Iona College
 Iona College was founded by the order of the Christian Brothers to educate young men, often the first in their families to attend college, in the Catholic higher education tradition. Over the years, it has grown in enrollment from a small to mid-size co-educational institution committed to making its graduates ethical problem solvers, independent thinkers, lifelong learners, and balanced individuals who integrate the spiritual, intellectual, civic, and emotional aspects of life. Since the College's inception, many accomplishments have resulted in Iona's campus expansion, increased enrollment, and increased recognition based on the increase in accredited programs and high rank in college reviews. Iona College is a diverse community of learners and scholars dedicated to academic excellence. Students and faculty alike are committed to education, intellectual inquiry and the values of justice, peace and service. Iona College partners with Genetic Alliance on the Community Centered Family Health History Project and also works with the Westchester Alliance of Academic Institutions for Aging Related Content and Workforce Development, an initiative to increase students' exposure to, and interest in, working with the older adult population. They produced a family health history tool for the intergenerational community.
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Fenruary 16, 2009: X-linked Lymphoproliferative Syndrome (XLP) Research Trust
 XLP (X-linked lymphoproliferative syndrome) is a rare genetic condition that often causes the need for a bone marrow transplant. The XLP Research Trust was founded in 2005 to raise international awareness of XLP, fund research on the disorder, and provide a point of contact and support for those families affected by XLP . Recently, XLP Research Trust has been able to provide $300k in funding for medical research, and these efforts have resulted in the identification and classification of XLP 2. You may have heard about them on the BBC news because of their widely publicized triathlon - the 2009 event is coming up in April!
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February 9, 2009: FoldRX Pharmaceuticals
 FoldRx Pharmaceuticals is a drug development company focused on first-in-class, disease-modifying, small molecule therapeutics to treat diseases of protein misfolding. The first drug candidate, Fx-1006A, is currently in a pivotal Phase II/III trial for a Transthyretin Amyloidosis (ATTR) Polyneuropathy indication and in Phase II for a cardiovascular indication, ATTR- Cardiomyopathy. FoldRx has launched the Transthyretin Amyloidoses Outcomes Survey (THAOS), a longitudinal, observational survey open to patients with ATTR to better characterize the natural history of the disease by studying a large and heterogeneous patient population. FoldRx is currently seeking clinical sites which treat these patients to participate in the registry. For more information, please contact the THAOS Project Manager, Barbara White: BWhite@foldrx.com or +1 (617) 252-5534.
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February 2, 2009: Genetic Science Learning Center
 The mission of the Genetic Science Learning Center, part of the University of Utah, in Salt Lake City, is to make science easy for everyone to understand. A staff of 10 is focused on developing educational materials on basic genetics, molecular genetics, newborn screening, and family health history. In 2007, the Learn Genetics website (http://learn.genetics.utah.edu) received over 7.1 million visits from 175 countries. Over 600 teachers of grades 4-16 participate in professional development programs each year. Two websites, Learn.Genetics and Teach.Genetics, deliver educational materials and provide resources for students, teachers, and members of the public.
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January 26, 2009: Cutis Marmorata Telangiectatica Congenita (CMTC)
 Since its inception in 1997, CMTC has become a worldwide authority on Cutis Marmorata Telangiectatica Congenita (CMTC), also known as Van Lohuizen Syndrome, through networking and participating in organizations such as NORD, Eurordis, and Genetic Alliance. Their 3 board members, 3 medical advisors, and 4 translators are committed to helping treat and research the condition internationally. One of their large initiatives is flying international patients into the Netherlands (where CMTC is located) for a free medical examination. They are proud that doctors from all over the world ask advice and refer directly to CMTC.
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January 12, 2009: International Society for Neonatal Screening (ISNS)
 The International Society for Neonatal Screening is committed to promoting the carrying out of appropriate screening for fetal, neonatal and infant sicknesses and disorders worldwide. With participants from 60 countries and an internationally moving Presidency and Secretariat, the professional society has been conducting its meetings since 1987. Three hundred fifty members focus on a variety of projects, such as quality standards, teaching, commissioning research, and harmonizing current practices and protocols. Current goals include better communication between laboratory professionals and equipment manufacturers, and establishing contacts with parent and advocacy groups. Join them in April for the ISNS European Regional Meeting in Prague.
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January 5, 2009: International WAGR Syndrome Association (IWSA)
 The goal of the International WAGR Syndrome (IWSA) is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives. Started in 2000, IWSA began working with 7 families and now has grown to serve over 150 internationally. Most recently IWSA has enrolled in the NIH/NICHD research project and has managed to start several WAGR-specific clinical studies. IWSA looks forward to its next event at the International Hyperphagia Conference in Boltimore, MD coming in July 2009.
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