– Summer 2021 Newsletter –
g6pd Deficiency Foundation Updates

We are excited to share with you the most recent g6pd Deficiency Foundation developments.

G6PD and COVID-19 Vaccine Update

In April 2021, the Foundation hosted a webinar that addressed the benefits and risks of the COVID-19 vaccines as they relate to the G6PD deficiency population. As the key speaker, infectious disease expert, Dr. Daniel Griffin, M.D., Ph.D., provided his invaluable insight into the composition of the different vaccines, the efficacy data available and his positive opinion about COVID-19 vaccinations for the G6PD deficiency population. Our guest speaker, Dr. Dan Vick, M.D. navigated the questions posed of Dr. Griffin, and fielded valuable questions posed by those who attended this virtual webinar. For those of you who live with G6PD deficiency and are still evaluating the safety and efficacy of the available COVID-19 vaccines, this webinar is available on the g6pd Deficiency Foundation homepage: https://g6pddf.org

You will find additional information about G6PD and COVID-19 on our website: COVID-19

If you or someone you know has G6PD Deficiency and was treated for COVID-19, please help us gather important information by taking our survey. COVID-19/ G6PDd SURVEY

 

G6PD Deficiency Continuing Medical Education  

Although G6PD deficiency has been a condition known to medical professionals for more than 6 decades, the depth and breadth of this condition is given little attention in medical training programs. Due to the prevalence of this condition in our world’s population (approximately 5% are G6PD deficient), and the need for additional education on this topic, over the past two years, the Foundation has constructed a CME about G6PD deficiency in newborns and infants. In conjunction with Columbia University College of Physicians and Surgeons, the Foundation expects to make this CME available by December 1, 2021. Stay tuned for further updates on this topic!

 

 

New York State Newborn Screening for G6PDd

We are incredibly pleased to report that the efforts of the Foundation resulted in the introduction of the Brody James Bill (NYS Bill No. A04572) to the New York State Congress in early 2021. As documented within the bill, all birthing facilities will be required to quantitatively test newborns for G6PD deficiency prior to discharge. To date, the New York State Assembly and the New York State Senate have unanimously voted to approve Brody James Bill. Despite our pending change in leadership at the gubernatorial level, the Foundation is hopeful that the incoming governor will agree with the members of the Assembly and Senate and will sign the Brody James Bill into law.

For those who reside outside of New York State, the Foundation is further hopeful that this seminal change to newborn screening will assist other states and jurisdictions to add quantitative G6PD screening to their respective newborn screening panel. We will keep you updated on our progress.

 

G6PDd and COVID-19 Task Force

In this ever-developing COVID-19 environment, those who are G6PD deficient are certainly aware that the virus, and some of the recommended therapies, could adversely affect those who are G6PD deficient. Acknowledging these concerns, a group of scientists, medical professionals and advocates of the G6PD deficiency population convened in 2020 to share information about the virus and its impact on the G6PD deficient population. As a result of this Task Force, critical information was provided to those who render front-line treatment to COVID-19 patients. The Foundation’s contribution to this Task Force is noted in the following medical publication: https://www.frontiersin.org/articles/10.3389/fmed.2020.584112/full

 

g6pd Deficiency Foundation Fundraiser

On July 11, 2021, Markee Harris, Vice President of the g6pd Deficiency Foundation, participated in the New York City Triathlon. Although there are many triathlons held yearly across the United States, the New York City Triathlon is known to many as the course takes the athlete through a grueling endurance race through Manhattan. As a result of her incredible efforts during this event, Markee raised $4,000.00 for the Foundation!! We are proud of Markee’s exceptional efforts and are thankful for the donations made by our community. If you would like to donate to the Foundation so we may continue our work for the G6PD deficient community, please click on this link: https://g6pddf.org. Every dollar you donate will assist the Foundation as we continue to raise awareness, educate and assist with screening for this all-to-prevalent condition.

 

Welcome to the Newest Member
of the g6pd Deficiency Foundation Board!

Brianne Braithwaite, M.S., R.D.N.
G6pd Deficiency Foundation Dietitian
– Bachelor of Science in Nutrition and Dietetics, University of New Haven, 2015
– Master of Science in Human Nutrition and Genomic/Genetics, University of New Haven, 2018

Brianne is a Registered Dietitian Nutritionist (RDN) who has worked in the public health sector for over four years. As an individual who is G6PD deficient and in her role as a nutritionist, Brianne hopes to provide insight and direction to those like herself who live with G6PD deficiency daily. In 2020, Brianne joined the g6pd Deficiency Foundation as our expert in nutrition. We are delighted to have Brianne on board and are confident her experience and training will provide insight to those of you who live with this condition. Welcome Brianne!

FAST FACT
Glucose-6-phosphate dehydrogenase (G6PD) is an enzyme found in every cell of the body. It is part of the chemical mechanism by which the body is able to process glucose into energy.

References can be found on our website

 

How Can You Get Involved?
We are glad you asked.
TAKE THE SURVEY
Surveys completed by those diagnosed with G6PD deficiency are beginning to flow in. Data from these surveys will be provided to researchers to learn more about this condition. If you know someone diagnosed with G6PD deficiency, please ask him or her to fill out our G6PDd Survey. Every response helps!

JOIN US ON FACEBOOK
Find us at Facebook.com/g6pdDeficiencyFoundation. ‘Like,’ ‘Follow,’ or ‘Share’ to help get the word out and get the latest updates.

SUPPORT OUR WORK
The g6pd Deficiency Foundation needs your help to allow us to continue with our mission. If you have the ability to donate, please go to our website: g6pdDf.org, or follow this link Help Our Mission.

You can also mail your donation check made out to:
g6pd Deficiency Foundation, PO Box 156, Babylon, NY 11702.

Any amount you can donate will help us continue to raise awareness and to provide education to those affected by G6PD.

All donations are tax deductible under the 501-C3 non for profit tax laws.

Thank you for your continued support and for spreading the word!
Through education and screening, we can raise awareness about this condition.
Your involvement in this effort is invaluable.
If you have any questions or suggestions, please contact us.
Best always,
The g6pd Deficiency Foundation
info@g6pdDF.org

Keely E. Harris, President/Founder—kharris@g6pdDF.org
Markee Harris, PA; Vice President — mharris@g6pdDF.org
M. Regina Phillips Munster, JD; Secretary — mrpmunster@g6pdDF.org
Karen Corley, CPA; Treasurer — kcorley@g6pdDF.org
Menachem Nagar, MD; Research & Development Chairman— mnagar@g6pdDF.org
Brianne Braithwaite, M.S., R.D.N.; Dietitian – bbraithwaite@g6pdDF.org