6 Essential Medical Nonprofits Serving The Afflicted
Medical science and healthcare have made enormous strides in recent history, but there are still many diseases lacking effective treatments, and many patients in need of crucial information or resources to manage their conditions. To address these shortcomings, nonprofits around the world assist researchers and create support systems for those impacted by illness. The following groups, listed in no particular order, work to bring hope to people dealing with serious medical issues.
Starting us off at #1 is the Angelman Syndrome Foundation, dedicated to advancing the awareness and treatment of the rare neuro-genetic disorder for which it's named. The group raises money to fund a wide variety of research efforts toward a cure, and helps those affected find ongoing studies in which they can enroll. The ASF has partnered with leading medical institutions across the country, to create a network of clinics offering comprehensive, lifelong care for afflicted individuals.
To assist parents caring for children with Angelman Syndrome, the Foundation provides a wide variety of informational resources to aid in understanding and managing the disease, and its Family Champions program helps those affected to connect with and support one another. The organization also offers expert advice from its Family Resource Team, and its Wall of Accomplishments celebrates the progress of affected children in overcoming the challenges imposed by the disorder.
Our #2, the Vascular Birthmarks Foundation, is an international charitable organization helping those affected by these potentially disfiguring and dangerous lesions, and connecting them with medical professionals for evaluation and care. Its databases of treatment facilities and practitioners help patients find specialists for their particular needs, and its scholarship program assists impacted individuals in pursuing their educational goals.
VBF seeks to correct the misconceptions that can lead to vascular birthmarks going untreated, creating awareness-raising efforts like the PutOnYourBirthmark social media campaign, or its Global Ambassadors advocacy network. The group organizes international conferences where experts on these conditions educate other medical professionals, and its Physician E-Learning Center provides continuing medical education courses on vascular abnormalities.
Next in the order is #3, the Concussion Legacy Foundation, which supports those affected by the long-term outcomes of head impact injuries, and promotes efforts at prevention. CLF works to educate the public about concussions and Chronic Traumatic Encephalopathy, sharing information about symptoms, pathology, and best response practices, as well as helping impacted individuals and families tell their stories. The Foundation's Global Brain Bank collects donated tissue samples to help advance research on CTE.
The CLF HelpLine provides personalized assistance to those dealing with the effects of brain injury, and its free Concussion Clinics tool helps them locate treatment specialists. The Foundation also organizes a number of prevention initiatives, such as its campaign to delay youth tackle football until age fourteen and its in-person education outreach at schools and athletic programs. The group's Media Project is a continuing education program for sports journalists, designed to encourage responsible coverage of concussions and head injuries.
At #4 we have the Pujols Family Foundation, a nonprofit benefiting people with Down syndrome, as well as Dominican Republic residents living in poverty. Founded by baseball star Albert Pujols and his wife Deidre, this faith-inspired organization creates supportive and memorable events for individuals with disabilities, including prom nights, cooking classes, and family bowling get-togethers. The Foundation's athletic and social offerings are designed to help Down syndrome individuals learn and build self-esteem.
The Pujols Family Foundation shares inspirational videos to encourage optimism in families affected by Down syndrome, and provides opportunities for new parents to connect with those experienced in raising children with disabilities. The group also conducts humanitarian missions to offer medical care, vital supplies, and infrastructure improvements to under-served communities in the Dominican Republic.
#5 on the list is the Barth-Syndrome Foundation, dedicated to advancing education, treatment, and research on the life-threatening genetic disorder BTHS. The Foundation provides grants to scientists investigating this condition, and offers a variety of resources for researchers, including an extensive database of information and biological specimens from affected individuals and family members. BSF also helps promote clinical trials of novel treatment approaches, and connects potential participants to active studies.
BSF provides a variety of tools for families dealing with this rare condition, from a guide for those who've just received a diagnosis to an informational toolkit on managing care. The organization shares profiles of its researchers, along with stories from individuals living with this illness. Other resources include online support groups, educational materials for clinicians, and a network of affected families sharing advice and encouragement.
We'll conclude with #6, the Progeria Research Foundation, dedicated to discovering treatments for this rare premature aging disease. Since its founding in 1999, PRF has created a number of key resources for research, including its global database of medical information and its repository of cells and genetic material from affected individuals. Studies enabled by the Foundation have led to the discovery of the gene responsible for Progeria, as well as the first-ever treatment to show success in trials.
The Diagnostic Testing Program from PRF offers free genetic assessments for children who may have Progeria, and the organization arranges clinical trials enabling patients to test novel therapeutic methods. The Foundation promotes awareness through the efforts of self-advocates like Meghan Waldron, the group's Youth Ambassador, and its Find The Children initiative works to locate undiagnosed individuals around the world and help them access the care they need.