September 2022 Newsletter

A Patient's Story: Alan

Together with his son, Alan runs an avantgarde, highly atmospheric, candle-making bar named Wax + Wine, where customers sip wine while pouring aromatic candles. Alan gets up early and drives himself to work 5 days a week, but he describes that he must deal with fatigue which hits during the day as well as leg weakness, leg stiffness, balance problems, and foot numbness.  He combats his loss of energy by taking a prescription drug that gives him temporary relief from the symptom. Alan shares, “This is necessary for me and most important in the morning.” He also naps mid-day. He has not found anything to relieve his symptoms of peripheral neuropathy.  

To read more of Alan's story...

Research Highlight: RARE-X Releases Report Showing Count of Rare Diseases Tops 10,000

The rare disease community has long cited that there are 7,000 rare diseases, affecting 350 million people, around the world. A report, The Power of Being Counted, released by Rare-X -- a nonprofit organization dedicated to transforming rare diseases in support of patients -- shows that there are now upwards of 10,000 rare diseases globally. As our Foundation continues to advocate for the discovery and development of treatments, this resource outlines steps we can take to share data and publish research to ensure diseases are entered into knowledge bases. Read more here...


Editor's Note: Research Highlight is an ongoing feature in our newsletter. It is focused on scientific publications of interest to our community.

Upcoming Events

From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals which connect our community members and deepen the understanding of how APBD impacts lives. 

These events offer peer support, opportunities to hear from health experts, and a chance to hear from Foundation leaders. Our upcoming events include:

Caregiver / Family Chat

October 13, 2022, 7:30pm ET | 4:30pm PT

November 10, 2022,  7:30pm ET | 4:30pm PT

This Chat is hosted by volunteer moderator Linda Cedarbaum. To learn more and register for this event, email Linda at

Patient Chat

September 28, 2022, 8pm ET | 5pm PT

October 26, 2022, 8pm ET | 5pm PT

This Chat is hosted by volunteer moderator Harriet Saxe. To learn more and register for this event, email Harriet at

We welcome new participants!

Upcoming Rare Disease Conferences

You may find these upcoming scientific conferences beneficial and informative:

Date: September 26 - 27, 2022

Hosted by: Chelsea's Hope Lafora Children Research Fund and the Lafora Epilepsy Cure Initiative

Click here for more details and to register. 

Date: October 20, 2022

Hosted by:  Association for Glycogen Storage Disease

Click here for more details and to register.  

EASY Facebook Fundraising

I challenge every member of the APBD community to make their next birthday a Facebook fundraiser for the APBD Research Foundation!

Setting up my July fundraiser was a snap. I got an automated message from Facebook which alerted me to the program and provided me with a simple template for wording my post. 

I set a fundraising goal of $250, which is roughly the cost of creating one recorded, subtitled Patient Chat.  I was delighted to raise three times that amount... all to support invaluable Foundation programming.

Harriet Saxe

Volunteer Moderator for Patient Chats

Chuck and Harriet Saxe

When Chuck was diagnosed with APBD in 2014, Harriet began volunteering with the Foundation seeking ways to support its work.

We hope you find this newsletter informative. If you know someone who would benefit from receiving our monthly newsletter, please ask them to join us by signing up HERE.

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Adult Polyglucosan Body Disease Research Foundation | 2257 East 63rd Street, Brooklyn, NY 11234
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