Impacting the lives of children diagnosed with rare diseases by funding research and offering scholarships for alternative therapy.
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Lucas was recently featured on Good Morning America!
Support Families with Rare and Orphan Diseases
Come along side of the families who have been given the worst diagnosis—a rare and orphaned disease. These families need prayer, donations and even support on social media to help bring awareness.
Together we can save these sweet babies.
There are approximately 7,000 known rare diseases in the United States, with an estimated 25-30 million total Americans living with rare genetic diseases. While specific conditions can be isolated, the total number of people with an orphan disease is overwhelming.
With a variety of causes, rare diseases can stem from a genetic origin and can be a direct cause of changes in genes or chromosomes. Some believe these diseases can be passed from one generation to the next. In other cases, they occur randomly in a person who is the first in a family to be diagnosed. With so many rare diseases and few affected per disease type, there is no government funding. The cost of just one disease can run up to millions of dollars.
How are we going to raise that kind of money?
THE MISSING PIECE:
Gene Replacement Therapy is the answer and the cure for many children and adults living with orphan diseases in the United States. The researchers are closer than ever in their gene therapy mice studies for rare diseases. What slows up the process is money and politics. The pharmaceutical companies coming alongside the universities to bring the therapy to the affected child.
Are You In Need of Assistance?
HOW WE CAN HELP YOU
Lucas John Foundation is an advocate for inclusion that all children should have access to the quality standard of care and access to therapies regardless of geographic location or economic factors. We offer scholarships for alternative therapies not covered by insurance.
Lucas John Foundation also offers financial assistance to pay for these alternative therapies so every child with disabilities has the opportunity to thrive. Similar to alternative treatments and therapies, DNA testing is often not covered by insurance. This is a crucial step in diagnosing most rare diseases; Lucas John Foundation has DNA testing scholarships.
We are a praying family and believe God will make a way when there is no way. We are willing to do whatever it takes to make an impact to help fund and raise awareness for the cure or treatment.
MAKING A COMMUNITY IMPACT
Our goal is to make as many resources available to families impacted by complex medical conditions and rare diseases. As a family, we know how expensive therapies can be. We understand the financial burden of prolonged hospital stays and caregiving expenses.
We want to make this an easy process. Fill out the form and we will present your request and needs before the board of directors for approval. They may approve all, part, or none of the applications depending on budget and request details. Be very specific about your exact needs, the cost, and as much detail as you can about your story. We do not offer cash awards. In order to protect the integrity of our organization, we will make the scholarship paid directly to the entity providing the therapy, treatment, or testing. We may provide gift certificates to families currently in the NICU or extended hospital stays. If you need prayer, support, or anything we are here for you. Advocating for families and patients with rare diseases is our mission.
Hi, I'm Lucas!
When I was born I was medically diagnosed with a rare genetic condition with no medical cure, Nonketotic hyperglycinemia, or NKH. This condition is SO rare that it's considered an "orphan disease,” this means it affects so few people in the world (500 for NKH), that there is little to no funding for research to cure it! We believe God will make a way when there is no way and believe in healing. You can learn more about my story here. NKH can cause many challenges with development, seizures, autism, cerebral palsy, and CVI blindness.
Research funds for NKH are left solely to the parents, and families of those affected, and cures do not run cheap! In fact, gene replacement therapy is the only real medical cure being researched for NKH, and the projected cost is estimated to be three million dollars!
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Help Us Support Families During their Darkest Days
What Others are saying
I have a little girl named Isla diagnosed with a rare disease. I am a single mother on a limited income. Her therapies are always expensive. When Isla needed the Cold Laser Therapy I applied for a scholarship with Lucas John Foundation. The board approved it and we now have the cold laser and it has helped her so much! Thank you for helping my baby.
We adopted our son Sam from foster care just before his second birthday. Sam has a lot of genes that are not doing the things they should be doing due to life circumstances.
We are so grateful for the Lucas John Foundation! With the QRI lights, we are able to help improve Sam's life. Thank you so much for your help!
In the news
ZoomWalkathon.com Video Conferencing Lucas John Foundation is Actively Working to Save Children with Orphaned Rare Diseases FOR IMMEDIATE RELEASE May 2020 (Mesa, Arizona) – The family of Brandon and Chancee Culp in Mesa, Arizona, is fighting for the life of their two-year-old son, Lucas John Culp. He was born in 2018 with a rare…
Rare diseases are by their very nature obscure and unknown, falling through the cracks when it comes to research budgets and treatment development. But now, a study has shown they are more common than we think. New research shows that rare diseases are not that rare. The United States classifies a rare disease as one…
Luk Vandenberghe, a gene therapy researcher at Massachusetts Eye and Ear and at Harvard Medical School, is spearheading an effort to develop a COVID-19 vaccine that uses an adeno-associated viral (AAV) vector to deliver genetic instructions for the SARS-CoV-2 spike protein into human cells. AAV vectors are used in the two commercial gene therapies in…
Donate to the Boler-Parseghian Center for Rare Disease in support of NKH Research. Make a minimum donation of $10 to cast your “Vote” for the NKH Research project to win a scholarship for NKH Research at Notre Dame. About ND Day:We are excited to come together once again for a special celebration of the University…
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As a non-profit, we rely on donations to fund and offer support to improve the quality of life for families in the NICU and children with RARE diseases. Lucas John Foundation is registered with the IRS as 501(c)3 (ID: 83-3683882) tax-exempt status.
AZ Nonprofit corporation established, January 19, 2019.