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 19
99 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.