ALD Connect

Financial Assistance

Our Patient and Family Support Program offers financial assistance to ALD patients and their families who meet our eligibility criteria. These grants are designed to support patients facing financial hardships due to the challenges of living with adrenoleukodystrophy.

Financial Assistance

We understand that many patients with ALD are seeking assistance with the high costs of treatment. We are unable to assist with medical expenses, but we are committed to easing the burden of everyday expenses that can quickly become overwhelming. Our program is designed to help with essential living costs such as mortgage or rent, car payments, and utility bills. We aim to provide some financial relief, allowing patients and their families to focus on other challenges that come with an ALD diagnosis.

At this time, we are prioritizing applicants who have not previously received assistance from ALD Connect.

Testimonials

“ALD Connect really helped me out in my time of need. I needed some financial assistance due to taking a trip out of town for an ALD specialist. They were very gracious in helping me pay my mortgage. The application process was very easy, the members were very helpful, and great communicators. Can’t thank them enough!!”
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“I would like to say that this has been an unprecedented time of hardship for our family, and the monetary support we received from your organization translated into acknowledgment of that, and a reminder that we are seen, remembered, and supported.”
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“We would like to thank ALD connect so much with the help they gave us through this time. My son recently went through a bone marrow transplant in September. We had many financial burdens. ALD Connect was able to help get my phone back and they also helped me with my car note. We are truly grateful for the help we received and can’t be more thankful. Thank you guys so much again!!”
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“I am forever thankful for this opportunity. It really means a lot to me and for my son to finally have his more functional wheelchair so he can travel wherever he wants with ease.”
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“First of all I would like to deeply thank ALD Connect for the help and support provided in reaching my evaluation with Dr. Eichler. I certainly feel blessed and lucky to have had that opportunity and follow-up with an expert on the disease.”
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“I can't thank ALD Connect enough for helping my fiancé, son and I in our fertility journey to a healthy baby free of ALD. ALD has taken a lot from us, sometimes it is hard to see the blessings but ALD Connect made it possible for us. ALD Connect was able to help us with our mileage to our fertility clinic since it was hours away. Thank you SO much, from my whole family!!”
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“The ALD Connect Patient and Family Support Program has been a huge help for my family. Both my son and I have ALD and living in Oklahoma means there is limited medical care we can access without traveling long distances. The ALD Connect program helped cover our travel expenses so we can focus on getting the best care we can and staying ahead of this terrible illness. No one asks for a diagnosis like ALD, but knowing there is help available takes a huge weight off! We are very grateful for the generosity of ALD Connect.”
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”Thanks for giving us the opportunity to get to make the wonderful trip to Minnesota for an appointment with Dr. Lund. My family and I are truly grateful for the opportunity.”
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“The help with airplane tickets and Airbnb helps to dedicate more money for medicines, blood transfusions, and be prepared for any additional expenses we will have.”
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“Suffering from a rare disease is hard enough! Thankfully organizations like ALD Connect help when there is no other hope in sight.”
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Michael Benton Travel Scholarship Program

As part of our Patient and Family Support Program, we provide travel scholarships for adrenoleukodystrophy patients needing to travel for standard of care appointments or other medically necessary appointments. In some cases, travel scholarships are available for events and meetings. Travel scholarships are intended to help offset travel costs but not to cover all costs in full.

Michael Benton's Story

Michael was diagnosed with adrenoleukodystrophy when he was 8 years old. His daily diet and taking Lorenzo’s Oil were the first changes in his early life. His beautiful smile, ambition, exceptional intelligence, kindness and civility served him well for many years, but those years were cut too short. These admirable qualities were sustained throughout all the ensuing challenges he would bravely face.

Mike graduated from Corpus Christi School ‘94, Loyola High School ‘98, and the University of Colorado ‘02. He was proud to be an Oriole for 5 years in the PPBA baseball program, and played football, volleyball and soccer at Loyola. Michael made lifelong friends throughout his school years who have always provided a huge support system for him. His academic accomplishments and successes during his brief business career were a great source of pride to him.

One of Mike’s greatest passions was world travel. Some of his most adventurous travels involved searching for a cure. These travels brought him not only gratification but also a continued challenge. Michael was dynamic and strong-willed, a formidable adversary, known for his tenacity and impeccable integrity. He was a good friend to all who knew and loved him.

Michael’s mother, Patti, served as the President and Board member of The Myelin Project for more than 20 years. Michael’s brother Greg was the Program Director. In July 2019, The Myelin Project joined forces with ALD Connect. Greg is now on the ALD Connect Board of Directors.

ALD Connect will use funds that are donated in Michael’s memory to support other patients and families by awarding travel scholarships. The scholarships will help enable patients and families to travel to appointments and meetings. This is a meaningful way to honor Michael since travel was such a huge part of his life.

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External Financial Resources

Many organizations besides ALD Connect provide financial support that may be useful for ALD patients and their families. Please consider reaching out to the following organizations for assistance.

Angel Flight NE coordinates free flights for medically stable patients – children & adults – seeking life-saving care and treatment outside of their geographic area. Please see Angel Flight’s Brochure here or visit www.AngelFlightNE.org for more information. Please note that although our partnership is with Angel Flight NE, Angel Flight will still assist patients outside the New England area.

Resources

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Special Needs Financial Planning

Cynthia R. Haddad – CFP® Wealth Advisor, Co-Founder & Partner

Navigating the Financial Aspects of ALD
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Get In Touch

ALD Connect is here to support patients, families, and healthcare providers navigating the challenges of adrenoleukodystrophy. Whether you have questions, need guidance, or want to learn more about how we can help, we encourage you to get in touch.