Cerebral Palsy Foundations for kids help in so many ways worldwide through various avenues:
- Financially
- Medically
- Innovatively
And it doesn’t stop there. So you may be wondering what are the names of these Cerebral Palsy organizations?
More importantly, what do they do and how can they help you?
Whether you are a parent, caregiver, in the healthcare industry, or someone who is diagnosed with cerebral palsy, these organizations have one thing in common…to improve the quality of life for those with cerebral palsy.
With that said, here are 5 Cerebral Palsy Foundations to know.
Cerebral Palsy Alliance Research Foundation (CPARF)
Today, cerebral palsy research is extremely underfunded which is where the Cerebral Palsy Alliance Research Foundation steps in.
With CP being one of the most common lifelong disabilities, you would assume research funding wouldn’t be an issue?
Well, unfortunately, it is and thanks to CPARF they are drastically changing that statistic one research project at a time.
Charity Status & Mission Statement
501(c)(3) Tax-Exempt Organization, Tax ID: 47-4851754
Mission: To fund the brightest US researchers to change what is possible for cerebral palsy.
How It Began…
In 2015, the Cerebral Palsy Alliance Research Foundation was established in New York City in partnership with Australia’s Cerebral Palsy Alliance (CPA).
With their “75-year history as the global leader in CP care and treatment, and as the largest private funder of CP research in the world” CPA recognized a major need for US-based research projects in the United States.
Hence, CPARF was born making cerebral palsy research an international success.
How They Are Making a Difference
As previously mentioned, when it comes to research, CPARF is one of the best at what they do.
They seek out “researchers who positively reshape what it’s like to live with CP” and fund them through giving grants to their top five research priorities:
- Early detection and early intervention
- Chronic pain
- Technology
- Regenerative medicine
- Genomics
How They Can Help You
If you are interested in applying for a grant, be sure your inquiry falls under one of their primary research needs as we covered above.
For grant information, they will, “accept applications from individuals, groups of researchers, committees, or project-focused foundations. Chief Investigators must be employed through an institution, i.e., a hospital, university, or institute.”
To apply for a grant, you may connect with their Grants and Contracts Manager here.
Tools and Resources
If you need to know the facts about cerebral palsy, CPARF has you covered. Learn more about cerebral palsy (what it is, causes, signs, and more) by clicking here.
Or if you need to stay up to date with stories and CP news-related things, access their news feed here.
►► Visit Cerebral Palsy Alliance Research Foundation (CPARF) ◄◄
Cerebral Palsy Foundation (CPF)
If there are 3 words to describe the Cerebral Palsy Foundation its Real.World.Impact.
Their collaboration efforts are driving this change by joining forces with influential thought leaders, researchers, and other organizations who are making an impact.
Charity Status & Mission Statement
501(c)(3) Tax-Exempt Organization, Tax ID: 13-6093337
Mission: To be a catalyst for creating positive change for people with cerebral palsy.
How It Began…
In 1949, Isabelle Weinstein Goldenson and her husband Leonard (then President of the United Paramount Theatres and ABC television) started their journey of treatment for their daughter was diagnosed with Cerebral Palsy.
They soon realized the lack of specialists in this field along with available and affordable care for kids with cerebral palsy. This inspired Isabelle and Leonard to help those working in the field of cerebral palsy. So they partnered with New York businessman Jack Hausman, and his wife, Ethel, to improve the quality of life for their children and others with cerebral palsy.
Fast forward 60 years later, the Cerebral Palsy Foundation is now one of the biggest non-government funders in the United States for cerebral palsy research. They are continuing to make great strides in helping the CP community from “improving therapeutic techniques to gaining new understandings of the brain and its functions.”
Note: The Goldenson’s and Hausman’s also founded United Cerebral Palsy (UCP) which we will cover in a minute below.
How They are Making a Difference
CPF is making the lives of those with cerebral palsy better through leading research, innovation, and collaboration with some of the top networks and medical institutions worldwide.
CPF collaborative networks, “bring together many of the country’s most prestigious medical institutions, as well as innovative thinkers in diverse areas such as technology and media, in order to accelerate not only the development of critical advances, but also their delivery.”
Their hope is to someday prevent cerebral palsy and developmental disabilities while focusing on clinical research to make the lives better for those with CP.
How They Can Help You
While CPF is working hard behind the scenes collaborating with some of the top individuals and institutions, there are a plethora of wonderful tools and resources available just for you.
Whether you have cerebral palsy, need to learn more about the diagnosis, or just want to access some fun and cool things, CPF is the place to go.
Tools and Resources
With that said, let’s explore these tools and resources you may utilize through CPF’s website:
Video library
Watch tips from experts or episodes from their show Awkward Moments, which brings humor while spreading awareness to the awkwardness that surrounds those with disabilities.
Fact sheets library
Access information about treatment, diagnosis, types of CP, assistive devices, and more!
Products and other cool stuff
Explore CP-related products to use in addition to their featured product of the month.
►► Visit Cerebral Palsy Foundation ◄◄
The LENN Foundation
Do you have a child with cerebral palsy who needs intensive therapy and insurance doesn’t cover it?
If you answered yes, The LENN Foundation may be able to help you.
Charity Status & Mission Statement
501(c)(3) Tax-Exempt Organization, Tax ID: 82-3275720
Mission: The LENN Foundation is a 501(c)(3) charity that provides grant opportunities for children with cerebral palsy to receive the pediatric intensive therapies they need to thrive.
How It Began…
Sisters, Lindsey and Alycia, founded The LENN Foundation back in 2017 inspired by sweet Lenny (who is Alycia’s son and Lindsey’s nephew).
Lenny was born October 1, 2015, three months premature, weighing 1 pound 7 ounces.
After numerous surgeries and spending seven months in the NICU (Neonatal Intensive Care Unit), Lenny was diagnosed with Cerebral Palsy at 18 months.
Lindsey and Alycia saw firsthand the struggles families faced financially who have a child with cerebral palsy. Especially, when it came to their child receiving intensive therapy.
This is how and why The LENN Foundation began.
How They Are Making a Difference
Through the power of intensive therapy, The LENN Foundation helps kids receive opportunities to:
- Take their first steps
- Boost confidence
- Gain independence
- Be able to stand, chew, grasp, walk…
And the list goes on of the miraculous stories and ways intensive therapy helps a child with cerebral palsy.
To check out heartfelt success stories of the kids helped you may go here.
How They Can Help You
Unfortunately, most health insurance does not cover intensive therapy, running a family upwards of $5,000 or more out of pocket for a 3-week program for their child.
That’s where The LENN Foundation steps in.
They allow kids to receive the therapies they need to live an all-out better quality of life by providing grants for:
- Feeding therapy
- Intensive physical therapy
- Occupational therapy
- Speech Therapy
- And more…
The LENN Foundation works directly with clinics and therapists throughout the United States to provide grants for kids. At this time, they are not international. If you reside in the United States and are seeking intensive therapy for your child, you may apply for a grant opportunity here.
Tools and Resources
If you need immediate access to CP-related products and resources, go to The LENN Foundation’s blog called Intensive Therapy for Kids. There you will find articles written by experts to answer your questions, needs, and tools to utilize to help your child thrive!
►► Visit The LENN Foundation ◄◄
United Cerebral Palsy (UCP)
If your child has cerebral palsy or another disability, do you need information on services that are available to you?
United Cerebral Palsy is here to help you navigate those resources and opportunities readily accessible in your area.
Charity Status & Mission Statement
501(c)(3) Tax-Exempt Organization, Tax ID: 20-3568840
Mission: To be the indispensable resource for individuals with cerebral palsy and other disabilities, their families, and their communities.
How It Began…
Along with Cerebral Palsy Foundation (CPF), United Cerebral Palsy (UCP) was also founded in 1949 by Isabelle and Leonard Goldenson along with their partners Ethel and Jack Hausman to improve the quality of life for their children with cerebral palsy and those with other disabilities.
“The two families placed an advertisement in the New York Herald Tribune to recruit families interested in improving available services to children with disabilities so that families could stay together, and people with disabilities could be part of the community.”
The response was overwhelming as hundreds of parents of children with cerebral palsy and other disabilities responded to the ad.
The families joined forces along with the Goldenson’s and Hausman’s to create an organization dedicated to improving the lives of those with disabilities.
How They are Making a Difference
United Cerebral Palsy has a nationwide network of affiliate services local to your area to help adults and children with disabilities as well as in Canada.
The services and support are provided on a community-by-community basis, serving the unique needs of people with disabilities in that region.
For instance…
- Did you just find out your child was diagnosed with a disability between ages 0 to 3? You may be eligible for early intervention services which are vital during a child’s early years.
- Do you need education services for your child? Children with disabilities from infant to 21 years of age are entitled to educational services under the federal Disabilities Education Act (IDEA) which ensures you have free public education.
- Do you need an assistive technology device? Each state has a federally-mandated Assistive Technology (AT) program to help those with disabilities. They will provide you with information about low-cost computers, loan programs, etc. To access your state AT program click here.
These are just a few of the many ways United Cerebral Palsy is making a difference.
How They Can Help You (Tools and Resources Included)…
UCP has a vast list of resources to assist you in many areas of your life whether you have cerebral palsy or another disability.
Keep in mind that not every affiliate network is the same regarding the services they offer in your area.
However, you can expect to see some if not all of the following services offered by United Cerebral Palsy affiliates to help you with:
- Housing
- Therapy
- Assistive technology training
- Early intervention programs
- Individual and family support
- Social and recreation programs
- Community living
- State and local referrals
- Employment assistance
- Advocacy
To find an affiliate network near you click here.
►► Visit United Cerebral Palsy ◄◄
The Pedal with Pete Foundation
The Pedal with Pete Foundation supports cerebral palsy research efforts to improve the lives of those with CP.
Charity Status & Mission Statement
501(c)(3) Tax-Exempt Organization, Tax ID: 34-1732505
Mission: Pedal with Pete is dedicated to raising funds for research leading to better prevention strategies and treatment protocols to improve the quality of life for people who live with cerebral palsy, their families, and caregivers.
How It Began…
The Pedal with Pete Foundation was founded by a cerebral palsy advocate, Pete Zeidner in Kent, Ohio.
“Even with an extreme case of cerebral palsy, Pete rode a recumbent bicycle with joy and purpose. He started the Pedal with Pete Foundation in 1993 with the goal of raising one million dollars for cerebral palsy research.”
How They are Making a Difference
The Pedal with Pete Foundation partners with the American Academy of Cerebral Palsy and Development Medicine (AACPDM).
The AACPDM is an international organization made up of high-level health care professionals who help Pedal with Pete.
Together, they assess, rank, and select grant proposals that come in to determine which research organizations to fund who are working to benefit those with cerebral palsy in addition to other early childhood on-set disabilities.
They award around 2 to 4 grants per year of $25,000/each towards CP research.
How They Can Help You
If you are a researcher aiming to prevent, treat, or possibly cure cerebral palsy, you may be eligible to receive a grant for your ongoing efforts.
To inquire about a grant request, email team leader, Sabine Kuhn at sabinekuhn@pedalwithpete.org. Be sure your grant request includes the following; (1) research goals, (2) time frames/schedules, (3) plans for measuring results and reporting progress, (4) criteria for success, (5) allocation of funds, (6) key staff participation.
►► Visit The Pedal with Pete Foundation ◄◄
Thank You!
We want to wrap up by extending our gratitude to thank you for stopping by today!
What other cerebral palsy foundations do you know? We’d love to hear about it in the comments below. ♥
Was this information helpful? If so, you’d make our day by sharing it! 🙂
About the Author
Lindsey is the co-founder of The LENN Foundation and content creator of the Intensive Therapy for Kids blog.
When she isn’t busy playing Godzilla with her son or chasing around her mischievous Rottweiler pup, she loves creating experiences and memories with her loved ones (traveling, watching a good flick, trying new n’ yummy restaurants). Speaking of restaurants, one of her favs is Taco Bell!
Most of all, she is grateful for her supportive circle of family, friends, and to live out her passion for helping kids with Cerebral Palsy (like her sweet nephew Lenny).
If you’re curious about The LENN Foundation, you may see the kids’ helped and feel-good content here. ♥
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Thank you for the kind words!
Haha thanks for the article my guy! After reading this article, I have a new found respect for you honestly… I know that there’s a lot of kids with Cerebral Palsy and other disabilities, and I feel like people never really talk about the charity aspect of things.. at least, from what I’ve seen.. I don’t know anyone with cerebral palsy, but I’ll make sure to donate to support the cause!
Thanks for stopping by to share your feedback! Your support is much appreciated!
Well that is actually informative to know. I will be honest that I am not really knowledgeable about Celebral palsy. But it is good to know that there are research foundations that are there to help people with this illness. I commend them all but I specifically like the Lenn foundation since they provide an intensive therapy program. But in all, I will support these foundations if ever given a chance. Let us help each other.
Hey Nico, it’s great to hear from you. Thanks for sharing your thoughts!
It’s difficult to be in a situation like this and not know where to turn for help. I know what’s it’s like to feel all alone with nowhere to turn so I want to applaud you for putting this information into the hands of the people who need it most. Whether it be information, financial help or emotional support, you’ve covered it all! Thank you.
Thanks so much Cynthia! I appreciate your sharing. 🙂