Personal or Financial Resources

The United Leukodystrophy Foundation (ULF) is working diligently to fund medical research and disease programming solely acquired through donations. Because of this focus, the ULF is not able to offer financial assistance to families affected with leukodystrophy at this time. There are many local resources that may be able to help. Consider reaching out to your local churches or service organizations such as Lions Club, Rotary Club, Elks Club, Moose Club, or Kiwanis Club with your story, you may be able to secure some scholarships from the community in which you reside.

  • The Arc: Creating special needs trusts and setting up guardianship
  • National Organization on Disability: Available government services fact sheets
  • Social Security Disability Resource Center
  • Social Security (SSI)
  • The Myelin Project: Financial assistance and travel stipends
  • HelpHopeLive.org: Fundraise for the medical expenses insurance doesn’t cover
  • YouCare.com:  Raise money for medical bills
  • Bonfire.com: Create custom t-shirts to support your cause and accept donations
  • UnitedHealthcare Children’s Foundation: UHCCF grants provide financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan.
  • Kelly Anne Dolan Memorial Fund: Children being referred for assistance must reside or be treated in Pennsylvania, New Jersey, or Delaware. Families may not apply to the Fund directly. Referrals must be made by a healthcare professional (for example, a social worker, case manager, nurse, doctor, or therapist).
  • ATI Foundation: Providing resources and funding to children with physical impairments to enhance and sustain a better quality of life
  • First Hand Foundation: First Hand Foundation is a public 501(c)(3) organization that provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care.
  • Parker’s Purpose Foundation: Monetary assistance given to any family who has a minor (18 and under) with a life altering illness or disability that is in an immediate financial crisis due to unforeseen medical expenses. Families who live in Ohio will be first priority in providing assistance but will extend outside the state if deemed necessary.
  • Patient Advocate Foundation: The Patient Advocate Foundation (PAF) provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses. Services include help with the following: access to care; co-pay assistance; social security disability applications; and insurance appeals.
  • National Organization for Rare Disorders (NORD): is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.
  • 211 Information: 211 Information is a confidential service provided by United Way Worldwide. The service provides people with local information about human services for everyday needs such as food, housing, and health. This service also provides resources in times of crisis.
  • Easter Seals: Provides services and support for adults and children with special needs as well as help to their families.
  • HealthWell Foundation: Helping the underinsured afford critical medical treatments — because no one should go without essential care.
  • Kiddos’ Clubhouse Foundation: Kiddos’ Clubhouse Foundation provides therapy scholarships to help families pay for critical therapies. Through partnerships and generous support from corporate and private donors, grants, and charitable events, we are able to relieve financial burdens and help families regain hope for their children.
  • Maggie Welby Foundation: The Maggie Welby Foundation offers grants for children and families that have a financial need for a particular purpose.  Grants may extend to children and families in need of help with bills, athletic opportunities, medical needs, or an opportunity that a child would not otherwise have.
  • Modest Needs: Grants and financial assistance for families managing health crisis.

TRAVEL

  • Southwest Airlines: Medical Transportation Grant Program
  • The Myelin Project: Financial assistance and travel stipends
  • Air Charity Network: Air Charity Network is a charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis.
  • Miracle Flights: Miracle Flights provides children and their families free flights to distant, specialized care and valuable second opinions.
  • The National Patient Travel HELPLINE:Provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network. Reach them online through their contact form at https://request.patienttravel.org/travel-request E-mail: info@nationalpatienttravelcenter.org
  • Air Care Alliance: Free air transportation to medical treatment for people with a financial need is provided by many volunteer pilot organizations. You can easily find a public benefit flying group near you!
  • Amgren: Amgen’s corporate giving initiatives are very diverse: research grants and fellowships; medical education grants; donations of cash, product and equipment; community involvement through corporate sponsorships; and cash donations and volunteerism by Amgen staff members.
  • Patient Airlift Services: Patient AirLift Services (PALS) arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up, for compassionate assistance.
  • Mercy Medical Angels: Mercy Medical Angels provides FREE transportation nationwide to and from medical care on the ground with gas cards, bus and train tickets and in the air through commercial airlines and volunteer pilots.
  • Children’s Flight of Hope: Providing air transportation for young patients and their families grants access to specialized medical care that might otherwise be out of reach, which in turn encourages faster and safer recoveries.
  • LifeLine Pilots: LifeLine Pilots facilitates FREE transportation
    for such medical needs as on-going medical
    treatments, diagnosis and follow-up care.
  • Corporate Angel Network: Arranges free travel on corporate jets for cancer patients, bone marrow donors, and bone marrow recipients. Call 914-328-1313 within three weeks of your appointment at a cancer treatment center.
  • Footprints In The Sky: FOOTPRINTS IN THE SKY is a Denver-based 501(c)(3) non-profit corporation dedicated to providing FREE FLIGHTS for patients to medical facilities throughout the United States using mainly donated charter and corporate jets. Those who seek our help are typically in need of routine, critical or life-saving care and cannot use commercial airline service or other means of transportation because of financial constraints and medical issues.

EQUIPMENT

  • The Mobility Resource: Comprehensive list of all grants/assistance to help buy handicap vans and adaptive equipment in all 50 states.
  • Wheelchairs 4 Kids: Wheelchairs 4 Kids is a 501 (c) (3) nonprofit organization dedicated to improving the lives of children with physical disabilities.
  • Giving Angels Foundation: Enhance the daily functioning of a child with special needs from a low income family by awarding grants for essential therapies*, life-changing equipment, essential family bills and specialized camps.
  • Hands To Angels Foundation: An organization supporting the identification and eventual prevention of rare genetic disorders, and providing financial assistance to families coping with the many complications of these disorders.
  • Variety – The Children’s Charity: Variety’s Care Program delivers critical life-saving medical equipment and services, healthcare and well-being to individual children and children’s health organizations. Variety’s Freedom Program delivers vital life-changing equipment and services for mobility, independence and social inclusion to individual children and children’s organizations. Variety’s Future Program delivers crucial life-enriching communication equipment and services, education and self-esteem to individual children and children’s organizations.
  • The Arya Foundation: The Arya Foundation serves to provide financial aid for the purchase of medical supplies and equipment for children with the medical condition.
  • Different Needz Foundation: The Different Needz Foundation has a mission to provide grants to individuals with developmental disabilities, their families and organizations that support them to provide medical equipment and/or services.
  • First Hand Foundation: First Hand Foundation is a public 501(c)(3) organization that provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care.
  • Kids Mobility Network: Kids Mobility Network is a 501(c)3 non-profit organization providing children with disabilities with durable medical equipment such as wheelchairs, walkers and other medical equipment.
  • Kya’s Krusade: Provides funding for adaptive equipment or therapy not covered by insurance for families with children with special needs.
  • McLindon Family Foundation: Provides adaptive bikes to families of children with special needs.
  • My Gym Challenged America: (MGCA) accepts applications from or on behalf of children with physical, cognitive or developmental disabilities and those coping with chronic illness. Requests, limited to gifts of $500 or less, may include but are not limited to: rehabilitative therapy, assistive devices, medical equipment and sensory items.

PRESCRIPTION ASSISTANCE

  • Partnership for Prescription Assistance: We offer a single point of access to more than 475 public and private programs, including about 200 programs offered by biopharmaceutical companies. We’ve helped millions of Americans to get prescription drugs for free or at very low cost drugs.
  • Needy Meds: Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs.
  • National Organization for Rare Disorders (NORD): NORD provides Patient Assistance Programs that provide financial assistance for medications, insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists.
  • Assistance Fund: The Assistance Fund provides various services, including education and financial aid, to help patients with chronic or serious illnesses cover the cost of FDA-approved medications. You can contact them directly at 855-845-3663.
  • Good Days Foundation: Good Days is dedicated to supporting those with life-altering conditions, from chronic to terminal. We do so in part by helping patients pay for what insurance won’t—costly, but disease-specific drugs and treatments, the very drugs and treatments that can extend life and alleviate suffering.