Newsletter – May 2016

Inspired by my grandson Brody, the g6pd Deficiency Foundation (the Foundation) was created. The battle he waged to survive his first few weeks of life, and the ongoing challenges he will face was caused by not detecting neonatal jaundice. A perfect storm was created by not knowing he had inherited G6PD deficiency and how this deficiency can be linked to life threatening jaundice. Presently the mission of the Foundation is to increase awareness of this common enzyme deficiency with its association to Jaundice and Kernicterus (brain damage). It has been recorded that 7% of babies born in USA are G6PD deficient.

Our aim is to continually enlighten the medical community as well as the general public affected by g6pd deficiency (G6PDd). It is a known correlation that 30% of Newborns with Kernicterus are G6PD deficient. Although Brody certainly rises to the challenges he faces daily, the lack of knowledge and awareness of this condition almost cost him his life. The event of Kernicterus could have been avoided. Awareness, Education, and Screening: these three words embody the mission of the Foundation. Our mission will develop and grow as we learn more. With your help, no one will have to fight a battle like Brody’s again.

We are very excited to inform you of our UPDATES:

  • The Foundation is an established USA 501C-3 non-for-profit organization. This means we perform under strict government guidelines and donations are 100% tax deductible.
  • Through fundraising efforts, the Foundation retained a medical research and writing consultant. He is tasked with gathering current scientific and medical information about G6PDd, analyzing the data presented in the writings, and filtering this information for relevant data so it can be accurately explained to all. By retaining this expert, the Foundation can provide scientifically backed answers to the questions that plague those suffering from G6PDd, and to assist those treating patients with G6PDd. As a starting point, the Foundation will focus upon understanding this deficiency in the population of newborns.
  • The Foundation website will be the resource of this information. We hope by the first half of 2016 to have this source of information available for all. This website will be continuously providing new information as more is learned about the G6PD deficiency. We have created a G6PDD Fast Fact Sheet for those who want an overview of what is covered in depth on our website g6pdDF.org. Let us know what you think!
  • The Foundation started an awareness campaign. At a Women’s Wellness Health exposition held late last year on Long Island, NY, we told the story of Brody’s Battle to relay first-hand experience with this condition. In light of this successful presentation, the Foundation intends to continue publicly speaking about G6PDd. If you have any recommendations for events or forums where a member of the Foundation should present, please contact us! Any avenue for raising awareness of this condition is valuable.
  • A survey has been designed to gather data that will help the Foundation identify areas that require additional information or research. If you are G6PD deficient, or are the parent of a child that is G6PD deficient, we need to hear from YOU. Your answers to this survey will create an unbiased compass, directing us to our mission! YOUR PARTICIPATION IS IMPORTANT. Pass the word to other G6PD deficient! To take the survey go to g6pdDF.org and click on survey.

The Foundation Wishes Everyone a Healthy & Happy Summer!

 

Best always

Keely Harris
President/Founder: G6pd Deficiency Foundation

[email protected]