Contact: Christopher Cosentino
Phone 212-242-1968, ext. 229
E-Mail ccosentino@hdsa.org
FOR IMMEDIATE RELEASE
HD Support & Care Network and Huntington’s Disease Society of America Partner for Stronger HD Support Groups in California and Arizona
“Our mission is to help HD families find resources for support and care.”
Santa Maria, CA – August 20, 2016: A new pilot project is underway between the Huntington’s Disease Society of America (HDSA) and HD Support & Care Network (HDSCN). HDSA/HDSCN Support Groups will be popping up in the underserved areas of California and Arizona very soon. Partially funded by Teva Pharmaceuticals, HDSCN is on a mission to find HD families who are seeking support and resources for their HD loved ones. The goal is to bring support groups to families who need it the most. HDSA has agreed to co-brand these new support groups with HDSCN adding much appreciated stability, and more accessibility to its HDSA Centers of Excellence, social workers and other vital resources. For more information about HDSA, visit HDSA.org.
“We are excited to partner with HD Support & Care Network to bring more support groups to underserved communities in California and Arizona,” said Louise Vetter, Chief Executive Officer of HDSA. “Working together we can ensure that more families will be connected to quality care. At HDSA, family is everything.”
There is presently no cure for HD, which affects more than 30,000 Americans with more than 250,000 at risk. This dominantly inherited neurodegenerative disease causes involuntary movements, emotional and behavioral disturbances and cognitive loss. Individuals in the late stages of HD require tremendous caregiving and assistance as they lose the ability to walk, talk, and take care of themselves.
“We are extremely grateful to be in partnership with the Huntington’s Disease Society of America for this pilot project, to bring more focus to support and care for HD families, particularly in underserved areas,” said Melissa Biliardi, President and Chief Executive Officer of HDSCN. “We are very optimistic about partnering with the premiere HD organization in the nation, that we will be able to expedite even more resources to our HD families.”
Biliardi founded Help 4 HD International in 2010 after her son was diagnosed with HD and discovered more HD families in the Central Coast Tri-Counties area than she ever imagined. Over time she realized that more focus on support and care was needed to directly benefit HD individuals and their families. HD Support & Care Network was born. She is diligently working to partner and collaborate with other organizations that will bring much needed resources to HD families.
HD affects the entire family. In some cases children are affected with Juvenile Huntington’s disease and require more support and care at an earlier age. Every child of an individual with HD has a 50% risk of inheriting the mutated gene that causes HD, so some families have children both with and without the disease. HD has affected some families for generations before being identified. Patients of every age, and their caregivers, have critical care needs that are only now beginning to be well understood.
“At HDSCN our philosophy of compassion, integrity and professionalism is critical in facilitating the best possible resources for the HD families we support,” Biliardi explains. “Now with HDSA as our partner, co-branded support groups in California and Arizona, HD Support & Care Network will be even stronger and more determined to help HD families.”
The Santa Maria HDSA/HDSCN support group is now being held on the second Monday of each month and individuals of all ages whose lives are affected by HD are invited to attend. Meetings are held at Bethel Lutheran Church, 624 E. Camino Colegio, at 12:00 noon until 1:30 pm. Future plans call for more support groups in addition to the resources and networking now underway. For more information about support group activities, call Melissa: 805-354-0708.
“We are here to help,” Biliardi emphasizes. “We have great hope in scientific research and clinical trials, but until we have a cure for Huntington’s disease we must passionately focus on finding the best support and care options for our loved ones who are living with it every day.”
“Support groups for Santa Barbara and San Luis Obispo are presently under development,” said Biliardi. “We are collaborating with physicians and social workers to give our HD community the best opportunity for most successful support and care options.”
HD Support & Care Network helps HD families find resources for support and care by collaborating with community services, social service agencies, medical resources and other organizations. For more information about HD Support & Care Network, and to support their mission, contact Melissa Biliardi at 805-350-0708 or melissa@hdscn.org and visit www.hdscn.org .
