About the Charities

Phelan-McDermid Syndrome Foundation

It is the mission of the Phelan-McDermid Syndrome Foundation to improve the quality of life of people affected by PMS worldwide by providing family support, accelerating research and raising awareness. The Phelan-McDermid Syndrome Foundation, established in 2002, is a 501(c)3 nonprofit group. The syndrome, which affects people worldwide, is a result of a deletion of 22q13 or a Shank 3 mutation.

The foundation is strongly focused on two complementary goals: Family Support and Research. We facilitate connections among families through our website, quarterly newsletter, Facebook, Twitter, regional gatherings, and a biennial international conference. Our conference brings together families, therapists, caregivers, and researchers. We are working hard to help find effective therapeutics for people with Phelan-McDermid Syndrome. We fund important basic and translational science, a web-based patient registry, and scientific meetings.

The Phelan-McDermid Syndrome Foundation is governed by a Board of Directors. In 2009 we established our first office, in Venice, Fla., and hired our first part-time employee.

What is Phelan-McDermid Syndrome?

Phelan-McDermid Syndrome (PMS) is a genetic syndrome caused by disruption of the SHANK3/ProSAP2 gene on the terminal end of chromosome 22. The most common form of PMS is caused by a de novo chromosomal deletion. For this reason the original name for PMS was 22q13 deletion syndrome.

The SHANK3 gene, which codes for the shank3 protein, is found in the brain, heart, kidney and other organs. Its most important role is in the brain. It supports the structure of excitatory synapses and is involved in processes crucial for learning and memory. It also has an important, if not fully understood, role in proper brain development. Defects of the SHANK3 gene are highly associated with autism. Individuals with Phelan-McDermid Syndrome often have autism or autism spectrum disorders.

There is a wide range of severity of symptoms observed in people with Phelan-McDermid Syndrome. Like other autism-related syndromes, PMS is associated with intellectual disabilities, sleep disorders and seizures. Most children with PMS have moderate to severe delays and often do not develop functional language. Infants with medium to large chromosomal deletions may have very low muscle tone, poor motor control, and problems with eating and sleeping. Other symptoms may include poor thermoregulation and dysplastic finger nails or toenails. Behavioral issues may stem from autism (e.g., repetitive behaviors), from poor communications skills, or unknown origin. For unknown reasons, toilet training is often difficult in this population. In spite of these issues, infants with PMS tend to be easily to amuse and adults often have a sweet disposition.

Thus far relatively few cases of PMS have been identified. Most identified cases are small children because testing is usually done early in life and reliable testing did not start until 1998. New genomic testing methods have not only made clinical testing more widely available, but have also led to significant new insights about the role of SHANK3 in PMS, autism, and schizophrenia, and the possible impact of other missing genes in cases of PMS.

For more information, visit the foundation's website.

Victory Therapy Center

Victory Therapy Center, a 501(c)(3) not-for-profit organization, was established in 1990 as Rocky Top Therapy Center by founders Doug & Vivian Newton who understood the physical and emotional benefits that horseback riding could offer their community’s population of individuals with disabilities.

Located on a working ranch in Keller, Texas, Victory Therapy Center is a Premier Accredited Riding Center qualified through Professional Association of Therapeutic Horsemanship (PATH) International. In order to obtain this premier accreditation, very stringent guidelines and standards must be met: Administration (organization, emergency and safety, documentation); Programs (equine management, equipment, volunteers, participants, instructors and health professionals); and Facility (safety and maintenance of buildings and grounds).

Today, the program operates six days a week, with a staff consisting of 14 employees that provide services for over 1,500 clients annually with physical, mental or emotional disabilities or challenges. The therapy team is assisted by 55 specially trained therapy horses and over 250 volunteers each week who provide in excess of 18,000 hours of volunteer service each year.

Staff members consist of PATH International Certified Riding Instructors, EFMHA (Equine Facilitated Mental Health Association) and EAGALA (Equine Assisted Growth and Learning Association) Certified Instructors, Leadership/Challenge Course facilitators, degreed mental health professionals, licensed social workers/counselors and physical therapists.

For more information, visit the center's website.

Folds of Honor Foundation Children's Fund

Folds of Honor Foundation is committed to the families of the armed services who have been wounded or killed while serving our great nation. We salute these heroic men and women, and have consequently established Folds of Honor Children's Scholarship Fund (CSF) to ensure no military family is left behind or forgotten. FHF through the Children's Scholarship Fund seeks to provide scholarships for Primary and Secondary Education (K through 12) for children of service members killed or 90 to 100 % disabled while serving in a combat zone in support of Operation Iraqi Freedom (OIF), Operation Enduring Freedom (OEF) or Operation New Dawn (OND).

Children of deployed service members are particularly vulnerable to stresses and trauma related to a parent(s) serving in a combat zone for an extended period of time. Repeat deployments, the loss of parents and parents suffering from combat-related injuries have dramatically impacted our children. As a nation, it is our responsibility to do whatever we can to support military families. CSF scholarships exist to subsidize the costs of tuition, approved tutoring, school uniforms, schoolbooks, fees, after school educational programs, and approved educational summer camps.

For more information, visit the project's website.

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