Big Hearts, Helping Hands: United Cerebral Palsy
For our EverydayFamily CARES spotlight, we want to share with our readers some amazing nonprofit organizations with a heart for empowering children and families; groups which recognize that a child is not defined by his or her diagnosis, but rather, as a precious little individual with gifts and dreams who just happens to have a serious medical condition or disability. By providing compassionate and expert medical services in their respective specialty areas along with camps, extracurricular activities, and support services, these groups lift minds, bodies, and spirits. Whether you are the parent of a child who can benefit from the services of one of these groups, or a parent with a heart to engage your family in volunteering or donating, the following organizations may be of interest to you.
Today we are going to take a look at the final of three organizations for this month: the United Cerebral Palsy organization. We hope you’ll visit our coverage of Shriners Hospitals here and the Muscular Dystrophy Association here.
EverydayFamily Heroes: Dr. Janice Brunstrom-Hernandez, M.D.
When pediatric neurologist, Dr. Brunstrom-Hernandez, speaks to her young patients, they really listen. Founder of the Pediatric Neurology Cerebral Palsy Center at St. Louis Children’s Hospital, Dr. Brunstrom-Hernandez has Cerebral Palsy herself. In addition to her work at St. Louis Children’s Hospital, Dr. Brunstrom-Hernandez also co-founded several camps for children with cerebral palsy including a sports camp, martial arts program, biking program, and an art workshop. Dr. Brunstrom-Hernandez is able to encourage patients to try therapies they might not otherwise attempt because they know her unique combination of medical expertise and personal experience is so relevant to their care.
Dr. Brunstrom believes physical fitness can benefit her patients; “One of the biggest ways to get these kids more aerobically fit and stronger is getting them involved in sports. I’ve seen kids who never thought they would be able to ride a bike, ride a bike. The goal is to make any sport accessible – I want there to come a day when they can choose any sport and make fitness a lifestyle.” EverydayFamily salutes Dr. Brunstrom-Hernandez for the outstanding achievements and medical advancements she has made in the specialty of Cerebral Palsy care and for the inspiration she is to her patients and the world. Read more about Dr. Brunstrom-Hernandez’s work at St. Louis Children’s Hospital.
Stated Guidelines from the UCP:
- UCP Mission: “To advance the independence, productivity, and full citizenship of people with disabilities through an affiliate network. This is achieved by providing services and support to more than 176,000 children and adults every day- one person at a time, one family at a time. UCP works to enact system change- to revolutionize care, raise standards of living and create opportunities- impacting the lives of millions of people living with disabilities and their families.”
- Specialty Areas/Criteria for Receiving Care: In addition to helping individuals with cerebral palsy, UCP provides services to other disabilities. In fact, UCP reports that “more than 65% of people served by UCP have disabilities other than cerebral palsy including Down Syndrome, Autism Spectrum Disorder, physical disabilities, and Traumatic Brain Injury (TBI). UCP local service providers, known as affiliates, provide services and support on a community-by-community basis, serving the unique needs of people with disabilities in their region.”
- “UCP affiliates provide services including advocacy, housing, therapy, assistive technology training, early intervention programs, individual and family support, transportation and community access services, social and recreational programs, community living, public education and outreach, information and referral, and employment assistance. Each affiliate offers a range of services tailored to its community’s unique needs. UCP has developed a comprehensive one-stop shop of resources for every state and territory in the U.S. These state-based guides provide contact information for state and local disability related services and organizations.”
o “UCP provides an online resource and community, My Child Without Limits, for parents and caregivers to exchange information and to help young children with any developmental disability or delay, start achieving a life without limits at an early age.”
o “UCP affiliates provide employment programs and assistance to job seekers with disabilities and work with employers to improve the recruitment and retention of persons with disabilities in the workforce.”
o “UCP offers the UCP Elsie S. Bellows fund, which helps provide assistive technology to individuals with disabilities.”
- Locations: The UCP national office is located in Washington D.C. The UCP has affiliates throughout the United States. To find the local UCP affiliate serving your community go to http://ucp.org/findaffiliate/.
- How to Support the UCP: There are many ways to support the UCP financially. Want to donate? Go here. UCP also has a special fundraising event coming up in September 2014; “Steptember is a four-week event to raise awareness and support for people with cerebral palsy and other disabilities. Beginning on September 3, teams around the world will challenge themselves to take 10,000 steps a day and fundraise along the way. Nearly any activity, including biking, physical therapy and yoga, can be converted into steps.” To find out more about the event and how you can participate, go here.
As these three amazing nonprofit organizations exemplify, no family of a child with a disability or medical condition should have to go it alone. Key factors in a family’s ability to meet the challenges that they are faced with as a result of their child’s medical condition or disability are the different types of support they receive (or don’t receive). Support may come in the form of help from relatives, friends, church members, and coworkers, as well as information, services and support from organizations such as Shriners Hospitals for Children, the Muscular Dystrophy Association, and United Cerebral Palsy. Alongside the child’s medical team, such nonprofits can help provide families with knowledge, early intervention tools, specialized equipment, resources, and therapies to help their children achieve their potential. They can also connect them with other families with the same diagnosis, with whom they can share concerns, techniques, and friendship. These “big hearts and helping hands” non-profits can empower children and make a huge difference for parents as they learn and accommodate to a new life pattern with their recently diagnosed child. These organizations become companions as they walk alongside families through all those years of childhood and into adult life with parents and their beloved daughters and sons.
On behalf of hundreds of thousands of families across the nation, EverydayFamily thanks Shriners Hospitals for Children, MDA, and UCP for all they do to help parents and children around the country. We salute the difference these fine nonprofits make every day improving the quality of children’s lives and helping them gain greater independence and confidence.
Stay tuned, readers, for next month’s EverydayFamily CARES spotlight featuring nonprofit organizations that provide assistance to families of children with Multiple Sclerosis, Autism, Hemophilia, and Mitochondrial disease.