Spinal Muscular Atrophy Assistance Resources
FightSMA often receives calls and emails from SMA families asking for help paying for equipment, medical services, or other forms of direct assistance. Because this falls outside of FightSMA's research and public awareness focused mission, the organization cannot provide funds of this sort — but, this doesn't mean that we can't help families find national and state-specific resources.*
We would like to add to this list. If there are websites, books, organizations, or other resources that you or other families you know have found helpful, we want to hear about them.
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National Programs
Financial Support
- For Equipment
- Muscular Dystrophy Family Foundation
The Muscular Dystrophy Family Foundation's only mission is and always has been to provide adaptive equipment and emotional support to individuals and families with muscular dystrophy or one of the other neuromuscular diseases covered under their program. Examples of equipment include: purchase and repair of orthopedic equipment and appliances; wheelchairs, leg braces, breathing machines, shower chairs, lifts and hospital beds, wheelchair lifts and ramps. (Not associated with MDA) - Disabled Children's Relief Fund
DCRF is a non-profit 501(c)(3) organization, provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. DCRF focuses special attention on helping children throughout the U.S. that do not have adequate health insurance. - First Hand Foundation
First Hand assists individual children with health-related needs when insurance and other financial resources have been exhausted. Age, financial, and other criteria must be met to be eligible. Applications accepted from anywhere in the world and international cases are considered on a case-by-case basis and are subject to special internal guidelines and restrictions. - United Healthcare Children's Foundation, Inc.
The United Healthcare Children's Foundation is an organization dedicated to helping children with disabilities whose families may not be comprehensively insured. They provide grants to pay healthcare providers for expenses relating to these disabilities. - For Home Renovations
- Muscular Dystrophy Family Foundation
MDFF's Miracle Dreams for Families program is designed to help deserving client families with larger items such as home modifications or repairs. (Not associated with MDA) - Rebuilding Together
Rebuilding Together is a nonprofit working to preserve affordable homeownership and revitalize communities and provides free rehabilitation and critical repairs to the homes of low-income Americans through a network of more than 200 affiliates. (Contact your local affiliate to see if you qualify.) - Lili's Lift
Lili's Lift provides capital, building, materials, and in-kind donations necessary to achieve one-time home renovation projects that will significantly assist children with disabilities and their families. There is no set formula for who receives grants from Lili's Lift, but recipients must have a medically-diagnosed and -verified disability, and must tangibly benefit from a discrete, one-time home renovation project. To nominate a family, visit the Lili's Lift website. - For Medical Expenses
- First Hand Foundation
First Hand assists individual children with health-related needs when insurance and other financial resources have been exhausted. Age, financial, and other criteria must be met to be eligible. Applications accepted from anywhere in the world and international cases are considered on a case-by-case basis and are subject to special internal guidelines and restrictions. - For Burials
- The Mason Kane Foundation Foundation
The Mason Kane Foundation Foundation's mission is to honor children who left this world too soon, by providing financial relief, empathetic support and resources for families who have suffered the tremendous loss of a child.
Equipment Sources
- S.M.A. Medical Supply
The mission of S.M.A. Medical Supply is to provide a hassle-free medical supply resource, rooted in understanding, experience, and honesty, that will carry SMA-appropriate products and strive to reduce the emotional and financial burdens of attaining them. - Little Star Foundation
The Little Star Foundation aims to improve the quality of life for children in need through national, international, and specialized support programs. Their efforts include providing medical supplies and equipment for children, families, and healthcare professionals as well as financial, educational, medical, spiritual and emotional support. - S.M.A. Support Inc.
SMA Support Inc. provides information and support to families with the goal of improving the quality and quantity of life of those affected by SMA. They provide a long list of equipment, including strollers, wheelchairs, car beds, suction machines, feeding pumps, computer equipment, and seating systems. - National Organization Caring for Kids
The National Organization Caring for Kids (NOCK) is dedicated to providing programs to improve the quality of life of chronically ill children across America, currently focusing on assistive technology. They work with a partnership network to provide wheelchairs to those in need with referrals from its RESNA-certified partners when all other traditional funding resources have been exhausted. - The Darrell Gwynn Foundation Wheelchair Donation Program
Since the organization was formed, the Darrell Gwynn Foundation, in conjunction with its partner Sunrise Medical, has been donating new, power wheelchairs to children and young adults in need across the country. To date, the DGF Wheelchair Donation Program, with the assistance of Sunrise Medical, has provided over 25 new wheelchairs to underprivileged youths and young adults, valued at over a quarter of a million dollars. - Creative Mobility and Progect Mobility
Creative Mobility specializes in helping individuals with disabilities find the right equipment solution for their specific needs. Custom fitting is an integral part of what they can do in addition to seating, adaptations and modifications. The mission of Project Mobility is to make a positive difference in the lives of children and adults with disabilities. They provide the services, resources, and equipment needed to promote better health, independence, and the freedom of mobility.
Travel to Medical Care
- National Patient Travel Center
The NPTC exists to facilitate patient access to appropriate charitable medical air transportation resources in the United States. The NPTC also exists to develop, administer and consolidate airline patient ticket programs and to operate various Special-Lift and Child-Lift programs on behalf of special disease organizations and/or clinical research centers in the United States. - Air Charity Network (ACN)
The ACN provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis. It is comprised of independent member organizations identified by specific geographical service areas. - Mercy Medical Airlift
Mercy Medical Airlift's (MMA) mission is to ensure that no needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation; further, to ensure the provision of urgent transportation in situations of compelling human need and homeland security emergencies. - Angel Flight
Angel Flight provides free flights to children and adults whose financial resources do not permit them to travel by other means to get necessary diagnosis or treatment. They also fly patients and families who are unable to use public transportation because of their medical condition, who need to fly immediately, or who live in remote areas where public transportation isn't available. - American Airlines Miles For Kids In Need®
Provides transportation for seriously ill children and their families from all over the world with needs related to medical, educational, and social concerns, and/or causes that heighten public awareness of children's issues. For more information about the guidelines for a child to receive benefits from Miles for Kids In Need, call 1-800-882-8880 in the U.S. and Canada or email miles.kids@aa.com - Southwest Airlines Medical Transportation Grant Program
The Southwest Airlines Medical Transportation Grant Program annually donates tickets to medical institutions for management and allocation, who in turn give to individual patients with financial or medical needs to receive medical transportation. Visit the website to see if an institution near you participates. Each hospital has its own guidelines for administration of these tickets, so please contact the Social Work, Travel/Concierge Service or Patient Assistance Department directly from one of the links to see if you qualify for travel assistance. - Ronald McDonald Houses
Ronald McDonald Houses around the world offer families a way to stay together, in proximity to the treatment hospital, and be comfortable and cared for during their stay. The generosity of volunteers and donors make it all possible. In return, families either stay at low or no cost, depending on the house.
State Specific Programs
Alabama
- The Individual and Family Support
- H.E.A.R.T.S. Program (Help: Emergency And Respite Treatment Services)
California
Colorado
Delaware
- Kelly Anne Dolan Memorial Fund
Provides financial assistance and information to uninsured families of critically ill or disabled children.
Illinois
- University of Illinois at Chicago Division of Specialized Care for Children Core Program
- Illinois Assistive Technology Program (IATP)
Kentucky
Louisiana
Maryland
Massachusetts
Minnesota
New Jersey
- Catastrophic Illness in Children Relief Fund
- Kelly Anne Dolan Memorial Fund
Provides financial assistance and information to uninsured families of critically ill or disabled children. - New Jersey Division of Developmental Disabilities
New Mexico
New York
- Friends of Karen
Friends of Karen's Family Support Program provides family case management to children in the New York metropolitan area with catastrophic and life-threatening illnesses and their families.
Pennsylvania
- Kelly Anne Dolan Memorial Fund
Provides financial assistance and information to uninsured families of critically ill or disabled children. - Pennsylvania Assistive Technology Foundation
Texas
- Department of Aging and Disability Services
- Children with Special Health Care Needs Services Program
Utah
Virginia
Wisconsin
- Family Support & Resource Center (Dane County only)
Information Sources
- Social Security Publications: Benefits For Children With Disabilities
This website is a valuable resource for information about all of Social Security's programs. - Financing Assistive Technology: Handbook for Funding
This is a comprehensive handbook with information about a variety of programs, including Medicaid, Medicare, and Social Security. Specific information may be out of date but many of the basic premises remain valid. - The National Assistive Technology Advocacy
Project
Supports the advocacy efforts of attorneys, advocates, service agencies, persons with disabilities and their families as they seek funding for assistive technology services and devices.
Health Advocates
Navigating the medical and insurance systems can be expensive. The "Health Advocate" industry has emerged to help guide patients and their families. These are paid services.
- Guardian Nurses Healthcare Advocates
Guardian Nurses Healthcare Advocates is committed to improving clients' experiences with today's healthcare system by providing advocacy services and managing care for people of all ages with acute injuries, chronic illnesses and ongoing health-related needs. - PinnacleCare Advocates
- Health Advocate, Inc.
Health Advocate, Inc., the nation's leading healthcare advocacy and assistance company, serves millions of Americans nationwide helping them navigate the healthcare system through a spectrum of time- and money-saving solutions.
*FightSMA provides these listings as a courtesy. FightSMA does not endorse or guarantee any services these organizations may provide, nor does FightSMA ensure that SMA families will qualify for services.