ENCEPHALITIS RECOVERY GROUP
https://www.encephalitisrecovery.org
At Encephalitis Recovery Group, we understand the strains, financial and social devastation, the suffering of long-term illness that other people around you may not understand.
We have found that Facebook groups can be a powerful and helpful way to connect to others who understand your experiences and can offer suggestions based on their relatable experiences.
Hashimoto’s Encephalopathy Group (HESA)
Founded in 2012 by Susan Foley and Nicola Nelson, HESA supports those affected by Hashimoto Encephalopathy (HE), also called Steroid-Responsive Encephalopathy Associated with Autoimmune Thyroiditis (SREAT). This rare autoimmune disorder causes brain inflammation that can reduce blood flow and lead to stroke-like episodes, seizures, muscle jerks, and coordination problems.
If inflammation becomes severe, it may cause ischemic damage—loss of brain cells from oxygen deprivation—that medications can’t reverse. BRIGHT’s research and rehabilitation programs address these lasting effects. In some cases, the resulting condition may be described as Chronic HIE caused by Acute HE, reflecting how HE can lead to long-term brain injury similar to Hypoxic-Ischemic Encephalopathy. Interested to learn more? Here is a full introduction to the links between HE and HIE.
PEEPS – HIE
Founded in 2018 by Sarah and Steve, Peeps is the only UK charity dedicated to supporting those affected by hypoxic-ischaemic encephalopathy (HIE)—a brain injury caused by lack of oxygen. Inspired by their daughter Heidi, affectionately called “Heidi-Peeps,” they created the charity after facing HIE firsthand.
Sarah recalls the fear and confusion following Heidi’s birth and the comfort she found in an online support group. As a result, Peeps aims to reach families early, offering guidance, resources, and reassurance. Whether you’re just beginning your journey or facing new challenges, Peeps stands ready to support you every step of the way.
United Cerebral Palsy Foundation
The United Cerebral Palsy Foundation ranks among the oldest cerebral palsy organizations in the United States. For more than 60 years, it has advanced cerebral palsy education and delivered diverse support services to individuals with the condition.
Moreover, the foundation continues to expand its outreach through innovative programs and partnerships. Its mission promotes independence, productivity, and full citizenship for people with disabilities. Through a strong affiliate network, the foundation empowers communities and fosters inclusion nationwide.
American Academy for Cerebral Palsy and Developmental Medicine
Funding for cerebral palsy research is extremely limited, but the AACPDM works to overcome this obstacle by raising funds to provide multidisciplinary scientific education for health professionals. They offer lectures, scholarships and grants to further the knowledge and research of cerebral palsy.
Reaching for the Stars
http://reachingforthestars.org/
Two mothers founded Reaching for the Stars in 2005. Since then, it has grown into North America’s largest parent-led pediatric cerebral palsy nonprofit. The organization actively promotes prevention, treatment, and ultimately a cure for cerebral palsy. As a result of its advocacy, March 25 became officially recognized as Cerebral Palsy Awareness Day. Furthermore, Reaching for the Stars continues to unite families and drive meaningful change across the cerebral palsy community.
Cerebral Palsy International Research Foundation
Since 1955, the Cerebral Palsy International Research Foundation has been dedicated to funding research and educational activities in hopes of discovering the cause and eventual cure of cerebral palsy. The organization provides funds not only to the United States, but also to the Middle East, Canada, the United Kingdom, Australia and Greece.
The Christopher Reeve Foundation
http://www.christopherreeve.org/
Founded by the late actor Christopher Reeve, the Christopher Reeve foundation focuses on funding research and improving the quality of life for people suffering from spinal cord injuries and other debilitating conditions that cause paralysis. A large portion of the foundation’s work in recent years has been devoted to cerebral palsy education and research.
March of Dimes Birth Defects Foundation
The March of Dimes works to ensure mothers experience healthy, full-term deliveries. It also conducts research to uncover threats to infant health. Since premature babies face a 30-fold higher risk of developing cerebral palsy, the organization prioritizes funding research grants in this area. Additionally, it provides a wide range of resources to parents of children with cerebral palsy. Through these efforts, the March of Dimes continues to support families and improve outcomes for vulnerable infants.
Danielle’s Foundation
http://www.daniellesfoundation.org/
Danielle’s Foundation honors the memory of Danielle Vick, a child with cerebral palsy who passed away in 2008. Founded shortly after, the organization offers comprehensive support and resources to parents and caregivers of children with cerebral palsy. It helps families access therapy, understand treatment options, and navigate the challenges of caregiving. In addition, Danielle’s Foundation empowers parents by providing tools that ease the burdens associated with their children’s conditions.
Foundations for Independence
Foundations for Independence is a Utah-based organization that focuses on providing children and adults with cerebral palsy with access to social, recreational, vocational and other supportive services and opportunities to enhance their quality of life. Foundations for Independence offers day camps for people with cerebral palsy, as well as family services and equipment purchase assistance.
Cerebral Palsy Scholarship Foundation
http://www.cerebralpalsyscholarship.org/
The Cerebral Palsy Scholarship Foundation believes that cerebral palsy shouldn’t be an obstacle for those who want to pursue a college education, and as a result, they offer scholarships to California residents with cerebral palsy. Scholarships are awarded based on academic performance, life accomplishments, financial need and special circumstances.
Pedal-With-Pete
Pedal-With-Pete is a non-profit organization that raises funds for cerebral palsy research by hosting three annual charity cycling events in the Midwest every year. They also fund grants for clinical trials to people with cerebral palsy.
My 15-year-old Granddaughter Lauren Walier has Cerebral Palsy. On 10/18/13 she spoke at The American Academy of Cerebral Palsy and Developmental Medicine, a global audience of doctors, researchers, clinicians, therapists, etc. in Milwaukee, WI. Please be patient as she is very emotional and nervous getting started.
http://www.youtube.com/watch?v=Ox3yBHIANTQ&feature=youtu.be
Please help Lauren by forwarding this to every email address you have. Lauren is a very courageously starting a crusade to help people less fortunate that she is by raising funds and awareness for cerebral palsy research and therapy. In May through August she rasied over $7000 for her cause. Please help us make Lauren’s foundation, Make Lemon Aide for Cerebral Palsy and Lauren a major fundraiser for CP. Every penny Lauren raises goes to her cause. Listen to her dreams and please support them to come true.
SherryWalier@comcast.net
Hi, i am orchidea marano a mother of a 4 years old son with cerebral palsy, at the age of 4 he still cannot walk and sit.. We are currently living in italy but my mother and sister are living in california, i heard about the stem cell treatment so i email hospitals for help, fortunately stem cell of america called me and told me that they wanted to help my son to be cured.. Ms.cristine duncan was the one who called me, she told me that they are willing to help me, that instead of paying 22,000 euro i will be paying 11,000 euro but i am a poor mother, i dont have that amount of money, thats why she told me to look for foundation who are willing to help children to be cured.. Please help me so that my son could walk and sit like a ordinary boy..im hoping for your help madam|sir.. You could also call me (0039)3890027323.. Thank you very much and Godbless.
Sincerely,
Orchidea marano
Buen día,
Me gustaría saber si mi hijo puede tomar un tratamiento con Cámara HIPERBARICA de Oxigenacion??
Mi hijo tienen 3 años, está por cumplir 4, tiene parálisis cerebral y el año pasado viajamos a Fort lauderdale a realizar este tratamiento (con Chamber of Hope), pero lastimosamente esta fundación ya cerró sus operaciones y no pueden recibirnos este año…
Usted puede ayudarme para que mi hijo lo reciba en este hospital??
Cynthia Ferrera
hello there. please i need a good developmental center for my 3year old daughter in USA. a center that is not expensive .she was diagnosed of having cerebral palsy since she clocked one. its not been easy since then for a single mom like me. please i need assitance or better still a good referal. because i want relocate to the united states so as to get a center and a job for me and ma daughter. please reply and dont ignore.
or do anything and its because of this my wife never work for almost 4 years now,all the problems of taking care of them is on me only.No body to hive a helping hand to us and its not easy at all sometimes i feel like giving up but if i do so who will do for them? so this is what life is all about for me.I really need help to be able to take care of them,as at now i have no job,and i dont know how im going to care for them without job.Please any body HELP
My son Mawunyo Quarshie was born almost 4 years now but as the stage of two weeks after birth he fell sick and the Doctors said he have Cerebral palsy and since then till now life is never the same for me and my wife.things became difficult and before he was born we have another boy then him.and now we have three boys and its very very difficult to take care of them,now mawunyo my son is 4 years but but cant walk,talk,sit or do anything and its because of this my wife never work for almost 4 years now,all the problems of taking care of them is on me only.No body to hive a helping hand to us and its not easy at all sometimes i feel like giving up but if i do so who will do for them? so this is what life is all about for me.I really need help to be able to take care of them,as at now i have no job,and i dont know how im going to care for them without job.Please any body HELP
Dear
I have a kid with Cerebral Palsy and he is growing now i need help for his treatment living in Kuwait. I am having Pakistani passport I need help for treatment for my kid where shall i go i am not rich person can anybody help me or guide me.
I need financial support and guidance.
If anybody can guide me please help me show me the way. Here in Kuwait we are hopeless and help less.
I also have a baby with cerebral.palsy and has global developmental delay and as a working mother i am really exhausted sometimes on how to properly take care of her.she was not brought to manila for checkups but was check by some.neuro.here in our province.due to lack of financial matters i was not able to bring him in manila.thank you..god.bless..mam arienda.from legazpi albay
We have 10 CP children here in SAVIS HOME near Trivandrum, in South India.The parents of these kids are manual laborers and often half starved.Naturally we are financially stressed.
We shall be extremely thankful if you could supply us with tips of whom to contact for funding their rehabilitation and stay in facility till they get cured.Kindly reply to ksavir2014@gmail.comor to me at awkb2012@gmail.com
Thank you!
Good day,
I live in jamaica, West Indies; and I am using this medium to find international financial assistance for my granddaughter Tianna Greaves who has cerebral palsy and is scheduled to come to Shriner’s Children’s’ Hospital in Philadelphia in June 2016, to see what can be done for her as she has severe curvature of the spine
If you know of any organizations that may assist with air fare, accommodation and any likely operational costs, please contact me by email or phone.
Thanks for your time.
Cynthia Vaughan
Tel: 1-876-839-8719 (c)
I’m new to CP. I just met a 5 yr old little girl with CP who is in need of simple shoes ever couple weeks. I’m searching for a program they may be able to help. Thank you.
ISO little girls tennis shoes size 11.
I have a new friend
I NEED ASSISTANCE WITH MY CEREBRAL PALSY SON AGED 2. 5 YEARS HE IHAS SIGNIFICANT DISABILITY ESPECIALLY IN WALKING AND TALKING HE CANT DO NIETHER
As a group of academic professionals we are trying to establish our national cerebral palsy database. We also intend to determine the prevalence of cerebral palsy in a project with epidemiologists. We were wondering if you could give advice and guide us about funding possibilities for these projects. Thank you for your kind attention.
Sincerely
Banu Anlar MD