Fighting For Possible.

TAKE PART in advocating and funding research that gives hope for a cure to families and children battling rare pediatric diseases.

Give Hope to Our Children.

Millions of kids are struggle with rare diseases. It’s heartbreaking that many won’t live to see their 5th birthday.Join us today and Take Part in changing these hopeless statistics.

Rare is more common than you think.

Will you take part in the fight for possible?

Learn how you can Take Part Today.

If all people with rare diseases lived in one country, it would be the world’s third most populous country.

More than 30 million children and families suffer from rare pediatric diseases. The Take Part Foundation was established to raise money to support those researchers who work tirelessly and endlessly to find answers.

Unfortunately, traditional funding sources for these projects simply don’t exist due to the small number of children impacted. As a result, research for cures or advances for these rare pediatric diseases often experience stops and starts that push progress off by years, if at all. Take Part bridges the funding gap so researchers can make enough progress to publish and apply for larger grants that sustain their research.

No longer do families need to feel sidelined and helpless, dependent on others to do something – anything  to make progress that might help their child.  These children are warriors, fighters—so are we. Join us and “take part” in the fight.



of kids with rare diseases will NOT see their 5th birthday


known rare diseases



of rare diseases have no FDA approved treatment



Americans are diagnosed with a rare disease


Help Rare Disease Warriors & Their Families THRIVE

Project Based Research

Our approach to funding research is unique. Similar to how an idea becomes a sustainable business, our projects have a plan, anticipated milestones and are reviewed by our advisors to ensure validity. We aspire to be a hub of information for families and doctors around the world who are working on rare pediatric diseases. Sharing findings mitigates the communication disconnect that often occurs. Our approach leads to collaboration and potential advancement.

Genetic Testing Resources

Many families struggle to get a diagnosis for their children who have rare or complex conditions. Genetic testing can help them find the cause of their child's symptoms and get the right treatment. However, some insurance companies do not cover genetic testing, leaving these families with a huge financial burden. We provide funding for families who get denied access to genetic testing by their insurance but need the test to help diagnose their child in order to get coverage for their needs.

Life Saving Individual Profiles

All too often parents are told, “just wait” and left to navigate this journey on their own, struggling to help their child survive long enough for science to catch up. We help families share their stories so that they have a simple page to share to better help educate the community on their child and what he/she needs to best thrive. This profile has proven life-saving in our child's story at a very critical time and we hope that it provides other children with an easy tool that has the potential to save their life in a vulnerable situation.

Rare Disease Research

How Our Research "Projects" Work

Each project is required to present a research case description, anticipated funding needs, project timing and proposed milestones. We also require that the team applying have 20% of the initial project funding in place. Our Take Part Foundation advisors (comprised of doctors, business executives and leaders within partner organizations) then review the application for validity of project model and medical assumptions, financial evaluation and proof of concept.

Once accepted, each Take Part project is assigned a project manager by the foundation. Our project manager will be responsible for oversight, including collaborating to set agreed upon project milestones and metrics, ensuring the receipt of updates on results, reporting to and validating with the foundation’s advisory board, as well as allocating project funding to the designated institution. It’s important to note that funding will only be issued to the institution affiliated with the project; funding will not be given directly to the research team or to any individual.

Mission Statement

Mission Statement

Our Founders

Our Founders

Board of Advisors

Board of Advisors

Our Partners

Our Partners

Our Current Project

Meet Natalie

Project 0001: PyroXD1 

PYROXD1 (Pyridine Nucleotide-Disulphide Oxidoreductase Domain 1) is a Protein Coding gene. Diseases associated with it present as extremely rare and progressive forms of muscular dystrophy. Less than 20 people worldwide have this specific mutation, one of those people is our daughter Natalie. Her case is considered extremely severe, as her symptoms set in at a very young age. Natalie cannot walk, crawl, or do any of the things any other 3-year-old can do. She can barely use her muscles at all. A simple cold means endless trips to the emergency room. Natalie needs constant round-the-clock care, receives hyperbaric oxygen therapy twice a week ,and uses a G tube to eat. She fights every day.

Her mutation has no cure. And, due to the small number of cases, traditional research funding from pharmaceutical companies and others simply doesn’t exist. It doesn’t make financial sense. 

Funding for this project, estimated at $250,000, will allow researchers to discover insights into the origin of this mutation, how it affects the body and possible treatment options. We know this won’t save Natalie, but we hope it will lead the way for finding a cure for PYROXD-1 and help others with rare pediatric diseases. 

How Can You Help?

Your donation will help us save and improve lives with research, education and emergency care.


Coming soon to help share stories of our Warriors