Impacting the lives of children diagnosed with rare diseases by funding research and offering scholarships for alternative therapy.
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 with each, there is no government funding. The cost of just one disease can run in the 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 an orphan disease in the United States. They are so close to having therapy for every rare disease. What slows up the process is money and politics. The pharmaceutical companies must charge enormous amounts to the patient because it is a one and done cure.
Are You In Need of Assistance?
HOW WE CAN HELP YOU
Lucas John Foundation offers scholarships for families and parents experiencing NICU. Alternative therapies for special needs are not typically covered by insurance, Lucas John Foundation offers financial assistance to pay for these alternative therapies so every child with extra care needs has the opportunity to thrive. Similar to alternative treatments and therapies, DNA testing is often not covered by insurance as well. This is crucial in diagnosing most rare diseases; Lucas John Foundation has DNA testing scholarships to relieve families of the very high cost of getting their child diagnosed.
MAKING A COMMUNITY IMPACT
Our goal is to make as many resources available to families impacted by special needs and rare diseases. As a family 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 application. 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 payment directly to the entity providing the therapy, treatment, or testing. We also may provide gift certificates to families currently in the NICU or extending hospital stay.
Hi, I'm Lucas!
I was born 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! You can learn more about my story here. NKH causes many challenges with development, seizures, autism, cerebral palsy, and CVI blindness.
Research funds 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 three million dollars!
Would it be Crazy to Ask You to Donate $1.00?
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.
Keeping you all in prayer. My brother died of Muscular Dystrophy Duchenne and he was one of Jerry's kids. When I was pregnant with both our kids I needed to have genetic testing done. Don't give up and keep the faith. I had a 50/50 chance with our son. And he\'s MDD free. I'm requesting a bracelet for awareness. God bless you and yours.
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!
I wear your bracelet & pray for you and your family daily. I work with babies in NICU and I am so proud of you & for how strong you are. Keep fighting Lucas, you have an army behind you.
To Lucas and his family. My family and church are praying for you. We pray that the cure will be found. We pray that you will live a happy, prosperous and fulfilling life. Never give up hope. Keep your faith and love for one another strong.
Hey Lucas, I was really touched by your story. I have already followed you back on TikTok and I'll keep sharing your story to my friends and family. I will keep you in my prayers, God will make a way, you will be healed and live to praise his holy name forever, Amen.
Hey buddy! I\'m Saphire Quintana from Beatrice, Nebraska! I heard your story and how brave and so so proud of you! I am a college soccer athlete and my mission is to represent something bigger than myself! And you inspire that mission and you inspire me to play hard and never give up! I am sure to represent you this season much love!
In the news
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…
You live in the shelter of the most high God. He alone is your place of safety, and we need to trust Him. Each morning we make sure we are “Psalms 91 Equipped” which declares protection and safety despite circumstances. We pray this Psalm over Lucas every day and believe that God is not only…
Submitted by Sarah Steel Having been featured in the Liverpool ECHO last year, Sarah Steel, a mother from Southport whose daughter, Isla, suffers from a rare metabolic disorder, is now renewing her daughter’s appeal in an effort to generate funding for scientists to explore gene therapy trials. In 2018, after discovering little Isla’s hands were twitching, Doctors…
MESA, AZ (3TV/CBS 5) – A Mesa family is hosting a “Zoom the Room” virtual walkathon to raise awareness for NKH and money for gene replacement therapy research, which could be life-saving for their little boy. Click to Watch video of the story on AZ Family. Lucas Culp was diagnosed with NKH, nonketotic hyperglicinemia, when…
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…
1st Patient Dosed in Trial of Gene Therapy, OTL-201, for Sanfilippo Type A Orchard Therapeutics announced the dosing of a first patient in a clinical trial evaluating its investigational cell-based gene therapy OTL-201 for Sanfilippo syndrome type A. OTL-201’s safety, tolerability, and efficacy is being investigated in the open-label, Phase 1/2 study (NCT04201405) taking place at Manchester University NHS Foundation Trust in the…
Nationwide Children’s Hospital chooses Mayo Pujols, most recently of Novartis Pharmaceuticals, for its new biotech subsidiary Andelyn. As the new CEO for Andelyn Biosciences, a Nationwide Children’s Hospital-owned gene-therapy startup, Mayo Pujols will begin to assemble a diverse team of up to 200 scientists, biochemists, engineers and technicians. The portfolio of gene-therapy products to be…
A new biotech startup in Dallas aims to speed the development of treatments for rare neurological diseases that disproportionately affect children. Taysha Gene Therapies, launched Tuesday with $30 million in seed financing, has partnered with UT Southwestern researchers whose mission is to eradicate genetic diseases that can deprive children of the ability to walk, talk,…
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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.