What’s new?

We are very excited to provide you with our updates:

G6PD and COVID-19
Since April 2020, we have learned that approximately 600 clinical trials are a being conducted across the world to assess COVID-19 treatments.
Two seminal questions keep surfacing as G6PDd patients navigate treatments for COVID-19:

  1. Are G6PDd patients more adversely affected by SAR-CoV-2 virus?
  2. Are G6PDd patients adversely affected by any COVID-19 therapies?

To date, this is the information we’ve gathered in response to these questions:

  • Infections are known to cause adverse hemolytic events in those with G6PDd.
  • Laboratory research had shown that other corona viruses (I.e., SARS and MERS)
    can more rapidly replicate in G6PD deficient cells.
  • It is suspected that hemolytic reactions can occur when G6PDd patients
    who have COVID-19 are treated with non-steroidal anti-inflammatory medications such as Advil.
  • Certain antimalarial therapies being used to treat COVID-19, such as Chloroquine
    and Hydroxychloroquine, can trigger a hemolytic reaction in G6PDd patients.
  • Methylene Blue, which is used to treat methemoglobinemia in COVID-19 patients,
    is a known hemolytic trigger for G6PDd patients.

You will find 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

We are working with Dr. Beth Kozel, a geneticist from the National Institutes of Health (NIH),
on a survey intended to assess the impact of COVID-19 severity on rare diseases, including
G6PD Deficiency.  We will let you know when this survey will be available!

Even though G6PDd is one of the most common enzyme deficiencies in the world, it is
categorized as a rare disease by NORD (National Organization Rare Diseases). However, it is the Foundation’s position that this condition is not a rare disease, but rather a rarely recognized genetic enzyme disorder. This is why G6PD deficiency awareness is so important.

  1. Education for Healthcare Providers
    This past year, the Foundation has continued working on the production of a virtual education seminar to improve awareness of G6PDd in the medical community. Columbia University’s College of Physicians and Surgeons will provide the continuing medical education credits for healthcare professionals. This seminar is being reviewed by a board of medical professionals that specialize in kernicterus and G6PDd.
    We anticipate having it available by early 2021.
  2. Providing Clarity on ‘What to Avoid’ 
    The Foundation also created a sub-committee to focus upon G6PD deficiency triggers. Utilizing research from reliable sources, the G6PD Deficiency Trigger Committee is continuing to identify and publish a list of foods, chemicals and drugs that patients with G6PDd should avoid. Because there is still much to learn about this condition, the G6PD Deficiency Trigger Committee will also investigate what research still needs to be undertaken to ensure that valid information about G6PDd is being shared with the public . If you have a background in nutrition or healthcare, or you are a G6PDd advocate and are interested in being part of this committee, please contact Markee Harris, PA at mharris@g6pdDF.org
  3. October 2019 AAP Conference
    In October 2019, members of the Foundation attended the American Academy of Pediatrics conference.  Discussions with clinicians who practice across the nation and across the world provided great insight into where G6PD screening is routinely performed, and in which locations screening is discretionary.   Many countries and island nations across the globe routinely screen for G6PD in newborns, in large part because the prevalence of the condition in their respective population.  Noting this disparity served to reaffirm the Foundation’s goal to increase awareness of, and testing for this condition in the United States.
  1. Informational Handout
    As there is much we already know about this condition, the Foundation constructed an informational handout about G6PD Deficiency. If you, or anyone you know, would like to have a copy of this free informational handout, please contact Regina Munster at mrpmunster@g6pdDF.org.

 

Collaborations:

23&Me 
Last year, The Foundation met with the DNA screening company 23 & Me to discuss their ability to screen for G6PDd. Learning that 23 & Me has the capability to screen for one G6PDd variant “V68M” (African variant and some hispanic, latino descent) was a welcome development. Recently, because of our discussions with their advocacy department, we learned that 23 & Me has made available testing for the Mediterranean variant “S188F”. This variant are of people of Southern European, Kurdish Jewish, Middle Eastern, Central Asian, and South Asian descent. To learn more about their screening for G6PDd visit: 23&Me.com

COVID-19/G6PDd Task Force
Because of the impact COVID-19 can have on patients who are G6PD deficient, medical professionals and G6PD advocates have recently  joined together to create the COVID-19/G6PDd Task Force.  Through this  collaborative effort, the members of the Task Force intend to gather information about the effects of this virus on G6PD deficient patients, while simultaneously raising awareness of the condition with those providers who have little education about this condition. Read on about this task force on our website:       COVID-19/G6PDd Task Force

 

                             Got the “D”?

“D” stands for deficiency. We all know Glucose 6 Phosphate Dehydrogenase is very hard to say, let alone remember. We have created another website to help the public become aware of one of the most commonly inherited enzyme deficiency in the World. Pass the Word and tell others about GotTheD.org

FAST FACT

G6PD deficiency (G6PDd) is one of the most common inherited enzyme deficiencies in the    world. Over 5% of the world’s population is affected. People who are G6PD deficient express  various degrees of impairment of the activity of this important enzyme.
*References can be found on our website

What’s Next?

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, the Foundation uses Zelle and GoFundMe for virtual donations.

  • For Zelle, please use the following email: Donations@g6pdDF.org.
  • If you prefer GoFundMe, our page can be located here: GoFundMe
  • You can also mail your donation check made out to:
    g6pd Deficiency Foundation
    PO Box 156    Babylon, NY 11702

All donations are tax deductible under the 501-C3 non for profit Tax Laws.
Thank you for your support!

It remains the goal of the Foundation to provide information to all who suffer from G6PDd. Having experienced how this condition can impact an infant from birth, Brodysbattle.info, the Foundation will continue to work tirelessly to provide sound information about this condition to all, and to encourage further research into this condition.

If you have any questions or suggestions, please feel free to contact us

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.

Best always,
Keely Harris
President/Founder: G6pd Deficiency Foundation

OUR BOARD MEMBERS

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