Impacting the lives of children diagnosed with rare diseases by funding research and offering scholarships for alternative therapy.

THE PROBLEM:

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 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 diseases in the United States. The researchers are so close to having therapy for rare diseases. 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 in the  NICU. Scholarships for alternative therapies for special needs children that are not typically covered by insurance. Lucas John Foundation offers financial assistance to pay for these alternative therapies so every child with special care needs has the opportunity to thrive. Similar to alternative treatments and therapies, DNA testing is often not covered by insurance. This is crucial step 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, 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 stay.

Our Story:
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!

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What Others are saying

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Infant son’s rare genetic disease inspire Mesa couple

December 20, 2019

Twenty-four hours after the birth of their son, a Mesa couple’s lives were turned upside down after learning he was born with a rare medical condition. For weeks, in between hospital stays and new challenges, Brandon and Chancee Culp never gave up hope and now they’re raising awareness and helping families in similar situations. The…

NIH renews $13M contract with Penn’s gene therapy program

December 18, 2019

The National Institutes of Health has once again renewed a five-year contract with the University of Pennsylvania’s gene therapy program, which will receive $13 million to support the advancement of gene-therapy research to the clinic. The contract was awarded by National Heart, Lung and Blood Institute to what operates as the Gene Therapy Program Preclinical…

Family hopes to see rare medical condition eradicated

December 17, 2019

MESA — Guided by faith, an Arizona family is on a mission to raise awareness of and eradicate a rare genetic condition that impacts about 500 children every year, including their toddler son. Along the way, they also hope to bring comfort and support to other families whose children face life-threatening medical conditions. “Our first…

Southport Mum renews appeal for daughter with rare disorder

By lucasjohn | May 22, 2020

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…

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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.