February 24, 2016
The Pitt Hopkins Research Foundation supports research to help find treatment, medicine, and a cure for Pitt Hopkins syndrome.
In 2014, doTERRA Wellness Advocate Maia Ginnelly’s son, Michael, was diagnosed with Pitt Hopkins syndrome—changing both of their lives forever. Pitt Hopkins syndrome is a rare genetic disorder that causes developmental delays, breathing problems, seizures, and more. After her son’s diagnosis, Maia turned to the Pitt Hopkins Research Foundation (PHRF) for information and resources that would allow her to help her son. PHRF strives to find new sources for treatment, medicine, and to eventually find a cure for Pitt Hopkins syndrome.
Though she initially used the foundation as a source of information, Maia soon began to volunteer with PRHF in hopes of spreading awareness, raising money, and improving the lives of those with Pitt Hopkins syndrome. Among her many efforts with PHRF, Maia has assisted with fundraising initiatives, promoting awareness, community outreach, and even offered her skills with graphic and computer design.
Although there is not currently any effective medicine or a proven cure for Pitt Hopkins syndrome, PHRF works tirelessly to provide funds for research that will help future generations to live healthier, higher functioning lives. Along with their search for medicine, treatments, and a cure, PHRF serves as a resource for communities and parents—providing updated medical information and advice. Because Pitt Hopkins syndrome includes severe symptoms, it can be difficult for those who are diagnosed to function at a high level. Breathing problems, epilepsy, gastrointestinal issues, lack of speech, anxiety, and even ADHD are just a few symptoms that affect those with Pitt Hopkins on a daily basis.1
Through her volunteer work with PHRF, Maia has found helpful resources for her son and family, and connected with other parents of children with Pitt Hopkins. Of her volunteer work, she says, “I am motivated to volunteer because of my son—his smile is the best! I’m also motivated by all the other Pitt kids. The opportunity to help others out there with Pitt Hopkins and similar syndromes is a very strong motivation for me. Science has come so far in the world of genetics, that looking for ways to make lives easier for our kids is a very real possibility, and I love being a part of it.” To see how you can help the Pitt Hopkins Research Foundation in their cause, visit their website