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</a> </div> </div> </li> </ul></div></nav></div></div> <div class="astra-advanced-hook-2017 "> <a href="/donate/"><button> Donate </button></a> </div> </div> </div> </div>  </div>  </header> <div class="ast-title-bar-wrap ast-advanced-headers-vertical-center" aria-label=""><div class="ast-inside-advanced-header-content"> <div class="ast-advanced-headers-layout ast-advanced-headers-layout-2" > <div class="ast-container ast-title-bar-align-center"> <div class="ast-advanced-headers-wrap"> <h1 class="ast-advanced-headers-title"> Financial Assistance </h1> </div> </div> </div> </div> </div> <div id="content" class="site-content"> <div class="ast-container"> <div id="primary" class="content-area primary"> <main id="main" class="site-main"> <article class="post-969 page type-page status-publish has-post-thumbnail ast-article-single" id="post-969" itemtype="https://schema.org/CreativeWork" itemscope="itemscope"> <header class="entry-header ast-header-without-markup"> </header> <div class="entry-content clear" itemprop="text" > <p>Thanks to a generous donation by the Hultman family, the ULF has established a memorial fund that is intended to provide financial assistance to leukodystrophy-affected families who are struggling to pay expenses directly related to the affected family member. <a href="https://ulf.org/hultman">Click here for more information.</a></p> <p>We have a list of potential other financial assistance sources below. There are also many local to you 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.</p> <h3 class="wp-block-heading" id="genetic-testing">GENETIC TESTING</h3> <p><a href="https://www.invitae.com/en" target="_blank" rel="noreferrer noopener">Invitae</a> offers no-cost genetic testing for families in the United States, Canada, and Australia, who are at risk of a leukodystrophy diagnosis. Find more information here: <a href="https://www.invitae.com/en/leukodystrophies/" target="_blank" rel="noreferrer noopener">https://www.invitae.com/en/leukodystrophies/</a></p> <h3 class="wp-block-heading" id="financial">FINANCIAL</h3> <ul class="wp-block-list"> <li><a href="https://abutterflyforchange.org/">A Butterfly for Change</a>: An organization that provides financial grants to families affected by leukodystrophies to assist with paying for care and associated costs.<br><a href="http://www.thearc.org/" target="_blank" rel="noreferrer noopener">The Arc</a>: Creating special needs trusts and setting up guardianship</li> <li><a rel="noreferrer noopener" href="http://www.nod.org/" target="_blank">National Organization on Disability</a>: Available government services fact sheets</li> <li><a rel="noreferrer noopener" href="http://www.ssdrc.com/" target="_blank">Social Security Disability Resource Center</a></li> <li><a rel="noreferrer noopener" href="http://www.socialsecurity.gov/" target="_blank">Social Security (SSI)</a></li> <li><a href="http://www.keepswimmingfoundation.org/" target="_blank" rel="noreferrer noopener">Keep Swimming Foundation:</a> Assistance paying for expenses related to medical hardship – mortgage assistance, hotel for families with loved ones who are in a hospital, and more.</li> <li><a href="https://helphopelive.org/" target="_blank" rel="noreferrer noopener">HelpHopeLive.org</a>: Fundraise for the medical expenses insurance doesn’t cover</li> <li><a href="https://www.youcaring.com/c/medical-fundraising" target="_blank" rel="noreferrer noopener">YouCare.com</a>:  Raise money for medical bills</li> <li><a href="https://www.bonfire.com/welcome/c5be609488e54/" target="_blank" rel="noreferrer noopener">Bonfire.com</a>: Create custom t-shirts to support your cause and accept donations</li> <li>Philadelphia Area, <a href="https://fredsfootsteps.org" target="_blank" rel="noreferrer noopener">Fred’s Footsteps</a>: Provides direct financial assistance for non-medical expenses, such as household bills, to make up for gaps in income as well as one-time extraordinary expenses, like medical equipment or home modifications.</li> <li><a href="https://www.uhccf.org/apply-for-a-grant/is-my-child-eligible/" target="_blank" rel="noreferrer noopener">UnitedHealthcare Children’s Foundation</a>: 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.</li> <li><a href="https://www.hopekids.org">Hope Kids</a>: We focus on five research-driven impact areas to ease the journey for families who are walking through the hardest time in their lives: hope and anticipation, family focus, community and support, safety and acceptance, economic support.</li> <li><a href="https://www.dolanfund.org/" target="_blank" rel="noreferrer noopener">Kelly Anne Dolan Memorial Fund</a>: 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).</li> <li><a href="#">First </a><a href="#" target="_blank" rel="noreferrer noopener">Hand Foundation</a>: 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.</li> <li><a href="https://parkerspurpose.net/" target="_blank" rel="noreferrer noopener">Parker’s Purpose Foundation</a>: 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.</li> <li><a href="https://aubreyrose.org" target="_blank" rel="noreferrer noopener">Aubrey Rose Foundation</a>: Helping families with financial need because of their children’s medical expenses and more.</li> <li><a href="http://www.211.org/" target="_blank" rel="noreferrer noopener">211 Information</a>: 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.</li> <li><a href="http://www.easterseals.com/" target="_blank" rel="noreferrer noopener">Easter Seals</a>: Provides services and support for adults and children with special needs as well as help to their families.</li> <li><a href="https://www.healthwellfoundation.org/" target="_blank" rel="noreferrer noopener">HealthWell Foundation</a>: Helping the underinsured afford critical medical treatments — because no one should go without essential care.</li> <li><a href="http://www.kiddosclubhousefoundation.org/" target="_blank" rel="noreferrer noopener">Kiddos’ Clubhouse Foundation</a>: 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.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">Maggie Welby Foundation</a>: 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.</li> <li><a href="https://www.hannahandfriends.org" target="_blank" rel="noreferrer noopener">Hannah and Friends</a>: (Regional – Indiana, the Michiana area, New York, Rhode Island, and Florida.) Provide quality of life grants for families with individuals with developmental disabilities.</li> <li><a href="https://www.modestneeds.org/index.asp" target="_blank" rel="noreferrer noopener">Modest Needs</a>: Grants and financial assistance for families managing health crisis.</li> <li><a href="http://bonemarrow.org/" target="_blank" rel="noreferrer noopener">The Bone Marrow & Cancer Foundation</a>: Offers financial assistance and free support services to cancer and transplant patients and their families</li> </ul> <h3 class="wp-block-heading" id="travel">TRAVEL</h3> <ul class="wp-block-list"> <li><a rel="noreferrer noopener" href="https://www.southwest.com/html/southwest-difference/community-involvement/charities/medical_transportation.html" target="_blank">Southwest Airlines</a>: Medical Transportation Grant Program</li> <li><a rel="noreferrer noopener" href="http://aircharitynetwork.org/" target="_blank">Air Charity Network</a>: 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.</li> <li><a rel="noreferrer noopener" href="http://miracleflights.org/" target="_blank">Miracle Flights</a>: Miracle Flights provides children and their families free flights to distant, specialized care and valuable second opinions.</li> <li><a rel="noreferrer noopener" href="https://believeintomorrow.org/" target="_blank">Believe in Tomorrow Children’s Foundation</a>: Free accommodations when you are traveling from afar to Baltimore, Maryland – Johns Hopkins Children’s Center.</li> <li><a rel="noreferrer noopener" href="http://www.aircarealliance.org/directory-groups" target="_blank">Air Care Alliance</a>: 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!</li> <li><a rel="noreferrer noopener" href="https://www.amgen.com/responsibility/grants-and-giving/" target="_blank">Amgren</a>: 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.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">Patient Airlift Services</a>: Patient AirLift Services (PALS) arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up, for compassionate assistance.</li> <li><a rel="noreferrer noopener" href="http://www.angelflight.com" target="_blank">Angel Flight:</a> Free air transportation for any charitable, medically related need. </li> <li><a rel="noreferrer noopener" href="https://mercymedical.org/" target="_blank">Mercy Medical Angels</a>: 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.</li> <li><a rel="noreferrer noopener" href="https://www.childrensflightofhope.org/" target="_blank">Children’s Flight of Hope</a>: 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.</li> <li><a rel="noreferrer noopener" href="https://lifelinepilots.org/" target="_blank">LifeLine Pilots</a>: LifeLine Pilots facilitates FREE transportation<br>for such medical needs as on-going medical<br>treatments, diagnosis and follow-up care.</li> <li><a rel="noreferrer noopener" href="http://www.corpangelnetwork.org/" target="_blank">Corporate Angel Network</a>: 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.</li> <li><a rel="noreferrer noopener" href="https://www.footprintsflights.org" target="_blank">Footprints In The Sky</a>: 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.</li> </ul> <h3 class="wp-block-heading" id="equipment">EQUIPMENT</h3> <ul class="wp-block-list"> <li><a href="https://www.themobilityresource.com/financing-handicap-accessible-vehicles/state-grants" target="_blank" rel="noreferrer noopener">The Mobility Resource</a>: Comprehensive list of all <em>grants</em>/assistance to help buy handicap vans and adaptive equipment in all 50 states.</li> <li><a href="http://wheelchairs4kids.org/" target="_blank" rel="noreferrer noopener">Wheelchairs 4 Kids</a>: Wheelchairs 4 Kids is a 501 (c) (3)nonprofit organization dedicated to improving the lives of children with physical disabilities.</li> <li><a href="https://www.feedingtubeawareness.org/" target="_blank" rel="noreferrer noopener">Feeding Tube Awareness Foundation</a>: Provide free feeding g-tubes belts and pads to any child that requires one.</li> <li><a href="http://givingangelsfoundation.org/apply-for-help/" target="_blank" rel="noreferrer noopener">Giving Angels Foundation</a>: 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.</li> <li><a href="http://handstoangels.blogspot.com" target="_blank" rel="noreferrer noopener">Hands To Angels Foundation</a>: 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.</li> <li><a href="http://usvariety.org/" target="_blank" rel="noreferrer noopener">Variety – The Children’s Charity</a>: 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.</li> <li><a href="https://www.openwheelchair.org" target="_blank" aria-label="undefined (opens in a new tab)" rel="noreferrer noopener">Open Wheelchair Foundation</a>: The Open Wheelchair Foundation is a collaborative group of people, working together to make a low cost, light weight, easy to build, and easy to operate, motorized pediatric wheelchair for small children who are in need.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">The Brooks Coleman White Foundation</a>: Provides financial assistance with purchasing medical equipment, clinical services or related needs </li> <li><a href="https://www.thearyafoundation.org/" target="_blank" rel="noreferrer noopener">The Arya Foundation</a>: The Arya Foundation serves to provide financial aid for the purchase of medical supplies and equipment for children with the medical condition.</li> <li><a href="http://www.differentneedzfoundation.org/" target="_blank" rel="noreferrer noopener">Different Needz Foundation</a>: 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.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">First Hand Foundation</a>: 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.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">The Oley Foundation</a>: The Equipment/Supply Exchange Program connects individuals seeking products to individuals donating products.</li> <li><a href="http://www.kidsmobility.org/" target="_blank" rel="noreferrer noopener">Kids Mobility Network</a>: 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.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">Chariots of Hope</a>: world wide distribution of used wheelchairs, at no cost to recipients</li> <li><a href="#" target="_blank" rel="noreferrer noopener">Kya’s Krusade</a>: Provides funding for adaptive equipment or therapy not covered by insurance for families with children with special needs.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">Magic Wheelchair</a>: Magic Wheelchair is a nonprofit organization that builds epic costumes for kiddos in wheelchairs — at no cost to families.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">McLindon Family Foundation</a>: Provides adaptive bikes to families of children with special needs.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">My Gym Challenged America</a>: (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.</li> <li><a href="#" target="_blank" rel="noreferrer noopener">Ramps.org</a>: Provides the necessary help for kids that need a ramp to move from a home to the outside. </li> </ul> <h3 class="wp-block-heading" id="prescription-assistance">PRESCRIPTION ASSISTANCE</h3> <ul class="wp-block-list"> <li><a href="#" target="_blank" rel="noreferrer noopener">Partnership for Prescription Assistance</a>: 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.</li> <li><a href="https://www.needymeds.org/" target="_blank" rel="noreferrer noopener">Needy Meds</a>: 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.</li> <li><a href="https://www.nicerx.com/" target="_blank" rel="noreferrer noopener">NiceRX</a>: NiceRx assists eligible individuals access over 1,500 FDA-approved prescription medications, via manufacturer approved patient assistance programs (PAP), for a set price of $49.00 per month for each medication we are able to assist with. There are no upfront costs or hidden fees.</li> <li><a href="https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/" target="_blank" rel="noreferrer noopener">National Organization for Rare Disorders</a> (NORD): NORD provides <a rel="noreferrer noopener" href="https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/" target="_blank">Patient Assistance Programs</a> that provide financial assistance for medications, insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists.</li> <li><a href="https://tafcares.org/" target="_blank" rel="noreferrer noopener">Assistance Fund</a>: 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.</li> <li><a href="https://www.mygooddays.org/" target="_blank" rel="noreferrer noopener">Good Days Foundation</a>: 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.</li> </ul> <h3 class="wp-block-heading" id="dental">DENTAL </h3> <ul class="wp-block-list"> <li><a href="https://www.hfgrotto.org" target="_blank" rel="noreferrer noopener">Humanitarian Foundation:</a> The Grottoes of North America Humanitarian Foundation is a 501 (c) (3) nonprofit organization that brings “Special Smiles” to children with special needs by providing them much-needed dental care.</li> </ul> <h3 class="wp-block-heading" id="experiences">EXPERIENCES</h3> <ul class="wp-block-list"> <li><a href="https://ulf.org/wp-content/uploads/2023/02/Evas-Butterfly-Wishes-revised-7-2022-11.pdf" target="_blank" rel="noreferrer noopener">Eva’s Butterfly Wishes for Rare Children</a>: Experiences for families with an affected child under 5-years-old battling a life-limiting rare diagnosis.</li> <li><a href="https://wish.org" target="_blank" rel="noreferrer noopener">Make A Wish Foundation</a>: Make-A-Wish has granted hundreds of thousands of life-changing wishes to children battling critical illnesses.</li> <li><a href="https://www.sunshinefoundation.org" target="_blank" rel="noreferrer noopener">Sunshine Foundation</a>: Sunshine Foundation’s sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children ages three to eighteen, whose families cannot fulfill their requests due to financial strain that the child’s illness may cause.</li> </ul> <h3 class="wp-block-heading" id="patient-advocacy">PATIENT ADVOCACY</h3> <ul class="wp-block-list"> <li><a href="http://www.patientadvocate.org/" target="_blank" rel="noreferrer noopener">Patient Advocate Foundation</a>: The Patient Advocate Foundation (PAF) provides case management assistance for the uninsured or underinsured with <em>life-threatening or debilitating </em>illnesses. Services include help with the following: access to care; co-pay assistance; social security disability applications; and insurance appeals.</li> <li><a rel="noreferrer noopener" href="https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/" target="_blank">National Organization for Rare Disorders</a> (NORD): is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.</li> </ul> <p><em>Do you know of a financial resource that should be listed here? 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