National Fabry Disease Foundation (NFDF)

05/20/2026

Hi everyone,

I am happy to share my latest article, published in Fabry Disease News, at https://fabrydiseasenews.com/columns/fabry-disease-often-juggle-multiple-symptoms-time/.

I expect to have unexpected health issues like others with Fabry disease. We manage them the best that we can.

Best wishes, Jerry Walter

Jerry Walter, MS
Founder and President
National Fabry Disease Foundation
Colonel, U.S. Army (Retired)
Columnist for Fabry Disease News https://fabrydiseasenews.com/columns/fabry-disease-often-juggle-multiple-symptoms-time/

Contact Jerry by email at [email protected] or by phone at 800-651-9131. I have been experiencing some phone issues, but I hope to have them fixed soon.

Because having Fabry disease means unexpected issues and symptoms are common, columnist Jerry Walter always has fresh topics to write about.

05/09/2026

Hi everyone,

We are looking for more participants.

We are partnering with a healthcare market research company called MedPanel to help encourage our members to participate in a paid, double-blinded, 30-minute online survey.

The goal of the survey is to help MedPanel’s client, a globally focused rare disease research company, gather valuable insights from individuals like you living with Fabry disease. We are interested in learning about your patient journey and experience with Pegunigalsidase alfa (Elfabrio).

As compensation for your time and input, MedPanel will issue a check incentive of $75 following completion of the survey and verification of your Fabry status.

If you are interested in this opportunity, please select the link below to complete a brief screening questionnaire to determine your eligibility to participate in the survey. This screening should take only 3 to 5 minutes. Then, if you qualify, you will be redirected to the survey.

https://medpanel.qualtrics.com/jfe/form/SV_9Gg3l9ufFvZB7kq?v=0&pag=NFDF

[Kindly note: you may receive this survey invitation from multiple sources; please participate only once, as compensation will be provided for a single submission only.]

It's important to note that this study does not involve receiving any treatments; MedPanel and the sponsoring company are solely interested in your honest perspectives and experiences. Also, please note that the study is double-blinded, and MedPanel will never share your identity with the sponsoring company. All data received by you in the survey will be analyzed only in aggregate and is anonymous. Any of your contact information MedPanel receives from us is held by them confidentially and will be used only to reach out to you about the opportunity.

Thank you very much for your interest. If you have any questions or concerns, please don't hesitate to contact Pallavee at [email protected].

Pallavee Kapoor
Assistant Vice President
Recruitment and Operations
MedPanel, Inc.

Thank you for your support! The NFDF Team

Contact the NFDF by email at [email protected] or by phone at 800-651-9131.

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

05/07/2026

Hi everyone,

Here is the video version of the FabryCast: Jerry Walter's Life with Fabry Disease with Julia Alton and Jerry Walter.

https://youtu.be/kWvg8WuNbIQ?si=eQ2A0zEmVA_y3HsJ

Thank you again, Alton.

Best wishes, everyone! Jerry Walter

In this episode we explore Jerry Walter's extraordinary journey living with Fabry disease, including his experiences with cardiac complications, a heart tran...

05/06/2026

Hi everyone,

I had the pleasure of speaking with Julia Alton, the Executive Director of the Canadian Fabry Association, as a guest for a FabryCast podcast.

Julia is a wonderful, talented podcast host, Fabry champion, and friend!

The FabryCast link to my episode is: https://creators.spotify.com/pod/profile/canadianfabryassociation/episodes/Jerry-Walters-Life-with-Fabry-Resilience-in-Action-e3igqs0

I hope that our discussion is helpful to others in some way.

Thank you so much, Julia Alton.

As a community, we still experience hardships, tragedy, and premature loss, but overall, the prognosis for people with Fabry disease seems brighter.

Best wishes, everyone! Jerry Walter

05/05/2026

Final Map for 2026!

Every year, the National Fabry Disease Foundation (NFDF) coordinates with volunteers across the United States to request that each state's governor formally recognize April as Fabry Disease
Awareness Month.

Across the country, Fabry families like yours are checking their mailboxes for a signed proclamation from their Governor's office. They'll take pictures to raise awareness, and we'll share them with the community via social media.

The NFDF coordinates these efforts, but the real legwork is undertaken by the individual volunteers in each state who submit the requests. A special thank you to every community volunteer for your hard work!

05/05/2026

Hi Everyone,

The National Fabry Disease Foundation is excited to host Dr. Uma Ramaswami on Thursday, May 7th at 5:00 pm ET for the next installment of our Notable Publication Webinar Series.

Please note this is a time change from the last announcement.

Each virtual meeting is approximately 60 minutes. Invited speakers will spend about 30 minutes breaking down the key points of the publication, followed by time for questions and discussion.

On Thursday, May 7th at 5:00pm ET, Dr. Uma Ramaswami will review the article "The use and performance of lyso-Gb3 for the diagnosis and monitoring of Fabry disease: A systematic literature review," for which she is the lead author.

Register for the meeting here: https://us02web.zoom.us/meeting/register/wPR14UTrR9-o0rBOtkSkhQ

If you'd like to access the publication before the presentation, you can find it online: https://www.sciencedirect.com/science/article/pii/S1096719225001015?via%3Dihub

Details about the schedule, speakers, publications, and registration links are available on our webinar website: https://tinyurl.com/nfdfwebinar

The primary audience for these meetings is individuals with Fabry disease, their family members, and caregivers. Primary attendees are invited to ask questions and actively participate in the webinars.

We also encourage registration and attendance by others who are connected to the Fabry disease community as “Other Attendees.” Other attendees may include Fabry healthcare providers and clinical staff, support organization representatives, and industry representatives. They participate as observers only. Webinars will be recorded and available to view on our YouTube channel at https://www.youtube.com/thenfdf.

Please select the links in this message. The links in the image below are not functional.

We'll see you soon, The NFDF Team

Contact the NFDF by email at [email protected] or by phone at 800-651-9131.

05/01/2026

Hi everyone,

Yesterday, we published our May 2026 edition of the Fabry Focus e-newsletter, "What's Happening in May 2026?"

The first of many events and notices in the newsletter is tonight.

If you subscribe to our newsletter and have not received it, please check your spam folder. If it's not in the spam folder, please subscribe again from the second button on our Link Tree at https://linktr.ee/thenfdf.

The newsletter is located at https://conta.cc/4u1JLEF.

Best wishes, The NFDF Team

Email from NATIONAL FABRY DISEASE FOUNDATION Monthly Fabry Focus Newsletter   A better understanding can lead to a better future. What's happening in May 2026? Call for community responses: We would

05/01/2026

Hi everyone,

One of the National Fabry Disease Foundation's mottos is Living Better Longer.

To celebrate Fabry Disease Awareness Month this year, we shared expert tips on how to live well with Fabry disease via our Fabry Focus email newsletter and social media channels.

Thank you for joining us! We hope you have found one or more of the recommendations shared this month helpful. We wish you all long, healthy, and happy lives.

If you value our many programs and services and enjoyed this content, please consider making a charitable donation to the National Fabry Disease Foundation to support these and other educational programs.

If you are outside the United States, please make a donation to your country's Fabry disease support organization instead.

As an IRS 501(c)(3) non-profit charitable organization, the NFDF relies on philanthropic support from individuals like you. Contributions of all sizes add up to make a tremendous difference.

Please make a donation today.

Donations are accepted by mail to:
National Fabry Disease Foundation
144 E King St, Unit 1419,
Hillsborough, NC 27278

Consider saving a stamp and donating online or via text.
Donate Online: https://tinyurl.com/Fabry-Awareness2026

All donation options are listed in our Ways to Give flyer athttps://www.fabrydisease.org/images/ReferencePDFs/Ways-to-Give-2025-10-12-2025.pdf

Thank you for participating in Fabry Disease Awareness Month,
The NFDF Team

Contact the NFDF by email at [email protected] or by phone at 800-651-9131.

04/30/2026

Hi Everyone,

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer with Fabry disease.

Today's topic is about managing the lung manifestations of Fabry disease. Symptoms of lung disease are often overlooked in the setting of Fabry disease due to their similarity with cardiac symptoms. Talk to your doctor about your lung health!

Recommendation #22
Don't overlook lung involvement

Airflow obstruction, the reduction in the ability to exhale air, is up to 10x more common in Fabry disease (FD) than in the general population. It has been reported in 18-46% of adults with FD across varying studies.

In adults with FD, the risk of developing airflow obstruction increases with age and smoking history. Men tend to develop lung disease at a younger age than women, but severe lung disease is seen in both sexes. The only modifiable risk factor here is smoking, so please do your best to avoid smoking!

Symptoms of lung disease include shortness of breath, cough, wheezing, chest tightness, and sleep-disordered breathing. There is significant overlap in symptoms of heart disease and lung disease; FD experts recommend evaluations for both organ systems.

Guidelines recommend that adults with FD have a spirometry exam (pulmonary function test) every 2 years.

Enzyme replacement therapy has been shown to improve lung outcomes if initiated prior to age 35 in one study and may slow lung decline across other age groups. Adjunct treatments for lung disease may include medications, breathing devices, and/or rehabilitation programs.

One thing that everyone can do at home to improve their lung health is diaphragmatic (belly) breathing! Jerry Walter learned the 4-7-8 method in a pulmonary rehabilitation program at the Duke University Medical Center. See Jerry's article in Fabry Disease News (https://fabrydiseasenews.com/columns/how-i-proactively-work-maintain-lung-health-with-fabry/), and refer to the American Lung Association's tutorials (https://www.lung.org/lung-health-diseases/wellness/breathing-exercises).

References: Ortiz 2018 (https://www.sciencedirect.com/science/article/pii/S1096719217307680?via%3Dihub), Skloot 2022 (https://www.youtube.com/watch?v=VZGrr5vmL1A) , American Lung Association ( https://www.lung.org/lung-health-diseases/wellness/breathing-exercises), Fabry Disease News (https://fabrydiseasenews.com/columns/how-i-proactively-work-maintain-lung-health-with-fabry/)

04/29/2026

Hi Everyone,

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer with Fabry disease.

Today's topic is about managing the renal (kidney) manifestations of Fabry disease. Many adults with Fabry disease are followed by a nephrologist, a doctor who specializes in the kidney.

Recommendation #21
Manage kidney disease

Data from the Fabry Registry shows that a high percentage of adults with Fabry disease (FD) have chronic kidney disease at some age. Across all ages, 72% of men and 87% of women have CKD stages 1 or 2, while the remainder (28% and 13%) had more advanced disease (CKD stage 3+).

The risk of kidney disease gets higher with age. Fabry Registry data show that of adults age 40 or older, 45% of men and 20% of women had advanced kidney disease.

Kidney function should be evaluated at least every year in adults with FD. Blood and urine tests are used together to assess kidney health.

The kidneys act as a filter. To measure how well they are working, a blood test is used to estimate your Glomerular Filtration Rate or eGFR, which determines the stage of a person's kidney disease.

The presence of albumin in the urine (albuminuria) is often one of the first signs of kidney disease in FD. To monitor FD, doctors measure the total protein and protein type ratios in a urine sample.

Fabry-specific treatment can improve kidney outcomes, especially when initiated before irreversible organ damage. In addition, adjunct treatments for the kidneys may be needed, including medication(s) and/or diet and lifestyle changes. Talk to your doctor for individualized recommendations.

References: Hopkin 2016 (https://drive.google.com/file/d/1xNOY1QLh2mjHa8Ix273EMz0Vy_e5pv4W/view), Ortiz 2008 (https://pubmed.ncbi.nlm.nih.gov/18175781/)

Thank you for participating in Fabry Disease Awareness Month,
The NFDF Team

Contact the NFDF by email at [email protected] or by phone at 800-651-9131.