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
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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.
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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 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.
Our Story:
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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What Others are saying
In the news
Notre Dame Day 2020
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…
Southport Mum renews appeal for daughter with rare disorder
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 family hosting virtual walkathon for NKH awareness
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…
Our Testimony of God’s Goodness in the Land of the Living
Brandon and I found out on June 20th, 2017 that we were expecting our first baby. The entire pregnancy was “textbook,” in fact, my doctor always called it “boring,” and we were grateful for that. With every passing week my “What to Expect” app kept track of Lucas’ growth and what I “Should be expecting”…
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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.