Newsletter Archive

March 2024 Join us for the Million Dollar Bike Ride; new rare disease book;… and more

Click here to read our March 2024 APBDRF Newsletter

February 2024 Duke University and Research Fund of the Hadassah Medical Organization Scientists Awarded MDBR Grants

Click here to read our February 2024 APBDRF Newsletter

January 2024 Research Highlight; Snag Your Free Sunglasses for Rare Disease Day;…

Click here to read our January 2024 APBDRF Newsletter

December 2023 Q&As with APBD researchers, season’s greetings…and more!

Click here to read our December 2023 APBDRF Newsletter

November 2023 Patient and Caregiver Chats; amplify your impact; new additions

Click here to read our November 2023 APBDRF Newsletter

October 2023 Fighting Every Way I Know How; Save the Date…

Click here to read our October 2023 APBDRF Newsletter

September 2023 Research funding opportunity; upcoming Chat events and Conferences;…and more!

Click here to read our September 2023 APBDRF Newsletter

August 2023 Patient and Caregiver Chats; APBD research funding…

Click here to read our August 2023 APBDRF Newsletter

July 2023 Increasing access to diagnostic tests, upcoming Chats, and more!

Click here to read our July 2023 APBDRF Newsletter

June 2023 🚴‍♀️$97,000 Raised for APBD Rare Disease Research!

Click here to read our June 2023 APBDRF Newsletter

May 2023 Looking to the future – The Foundation announces 2023-2025 Strategic Plan and new board members…

Click here to read our May 2023 APBDRF Newsletter

April 2023 🚴🏻‍♀️Ride with us at the Million Dollar Bike Ride to advance APBD research

Click here to read our April 2023 APBDRF Newsletter

March 2023 Access the Guideline on the go; June 10 — MDBR for rare disease research…

Click here to read our March 2023 APBDRF Newsletter

February 2023 Rare Disease Day; a Mother’s Perspective…and more!

Click here to read our February 2023 APBDRF Newsletter

January 2023 Thank you for your incredible support; APBD debuts on KevinMD.com;…and more!

Click here to read our January 2023 APBDRF Newsletter

December 2022 Q&As with APBD researchers, season’s greetings…and more!

Click here to read our November 2023 APBDRF Newsletter

November 2022 Catch-up on monthly chats, community shout-out … and more!

Click here to read our November 2022 APBDRF Newsletter

October 2022 A patient story; upcoming Patient and Caregiver Chats; … and more!

Click here to read our October 2022 APBDRF Newsletter

September 2022 A patient story; the power of Facebook fundraising; … and more!

Click here to read our September 2022 APBDRF Newsletter

August 2022 MDBR’s APBD research funding opportunity; research highlight;…and more!

Click here to read our August 2022 APBDRF Newsletter

July 2022 Remembering one of our own; summer events; … and more!

Click here to read our July 2022 APBDRF Newsletter

June 2022 Newsletter – Highlights from our MDBR campaign; physicians’ directory resource; and more…

Click here to read our June 2022 APBDRF Newsletter

May 2022 Newsletter – A successful conference; half-way point for the Million Dollar Bike Ride fundraiser, and more…

Click here to read our May 2022 APBDRF Newsletter

April 2022 Newsletter – In less than ONE month…

Click here to read our April 2022 APBDRF Newsletter

March 2022 Newsletter – Remembering special days, Research highlight, and Save the DATES!

Click here to read our March 2022 APBDRF Newsletter

February 2022 Newsletter – Rare Disease Day, RAO Grant Update, Special Patient Chat, and More!

Click here to read our February 2022 APBDRF Newsletter

January 2022 Newsletter – Happy New Year, funding promising research, community congress…

Click here to read our January 2022 APBDRF Newsletter

December 2021 Newsletter – Top Articles of 2021, Amazon Smile and MORE!

Click here to read our December 2021 APBDRF Newsletter

November 2021 Newsletter – Raising the profile of APBD; research highlights … and more!

Click here to read our November 2021 APBDRF Newsletter

September 2021 Newsletter – Healthcare guidelines, research highlights…and more!

Click here to read our September 2021 APBDRF Newsletter

August 2021 Newsletter – APBD in the news, 2020–The Year in Review…and more!

Click here to read our August 2021 APBDRF Newsletter

July 2021 Newsletter – A New Prevalence Study, One Young Man’s Impact…

Click here to read our July 2021 APBDRF Newsletter

June 2021 Newsletter – Thank you for the gift of research, Patient and Caregiver Chats…

Click here to read our June 2021 APBDRF Newsletter

May 2021 Newsletter – Ride with us at the MDBR; explaining GBE1 mutations’ presentations…

Click here to read our May 2021 APBDRF Newsletter

April 2021 Newsletter – Research Alert, Upcoming Events, and more!

Click here to read our second April 2021 APBDRF Newsletter

April 2021 Newsletter – Research Alert

Click here to read our April 2021 APBDRF Newsletter

March 2021 Newsletter – Research Announcement, Upcoming Events, and more!

Click here to read our March 2021 APBDRF Newsletter

February 2021 Newsletter – Rare Disease Day

Click here to read our February 2021 APBDRF Newsletter

January 2021 Newsletter – Rare Disease Day

Click here to read our January 2021 APBDRF Newsletter

December 2020 (ii) Newsletter -Most read articles in 2020

Click here to read our second December 2020 APBDRF Newsletter

December 2020 Newsletter – Giving Tuesday

Click here to read our December 2020 APBDRF Newsletter

November 2020 APBDRF Newsletter- Family/Caregiver Chat Group

Click here to read our November 2020 APBDRF Newsletter

September 2020 APBDRF Newsletter- September E-Newsletter

Click here to read our September 2020 APBDRF Newsletter

August 2020 APBDRF Newsletter (ii)- How Many APBD Patients Are There?

Click here to read our second August 2020 APBDRF Newsletter

August 2020 APBDRF Newsletter – August E-Newsletter

Click here to read our August 2020 APBDRF Newsletter

Summer 2020 APBDRF Newsletter – Summer Update

Click here to read our Summer 2020 APBDRF Newsletter

Spring 2020 APBDRF Newsletter – Spring Update

Click here to read our Spring 2020 APBDRF Newsletter

Winter 2020 APBDRF Newsletter – Winter Update

Click here to read our Winter 2020 APBDRF Newsletter

Fall 2019 APBDRF Newsletter – Summer Update

Click here to read our Fall 2019 APBDRF Newsletter

Summer 2019 APBDRF Newsletter – Summer Update

Click here to read our Summer 2019 APBDRF Newsletter

March 2019 APBDRF Newsletter – Our Impact on Rare Disease Day

Click here to read our March 2018 APBDRF Newsletter

February 2019 APBDRF Newsletter – Help Us Make an Impact on Rare Disease Day

Click here to read our February 2019 APBDRF Newsletter

February 2019 APBDRF Newsletter – Winter

Click here to read our February 2019 Winter Update APBDRF Newsletter

October 2018 APBDRF Newsletter – Fundraiser Update

Click here to read our October 2018 APBDRF Newsletter

February 2018 APBDRF Newsletter – Help us, help you!

Click here to read our February 2018 APBDRF Newsletter

Fall 2017 APBDRF Newsletter – Giving Tuesday

Click here to read our Fall 2017 Newsletter

October 2017 APBDRF Newsletter – APBDRF attends NORD Breakthrough Summit in Washington, D. C.

Click here to read our October 2017 Newsletter

Summer 2017 APBDRF Newsletter – 2017 Marathon run

Click here to read our Summer 2017 Newsletter

April 2017 APBDRF Newsletter – How to Leave a Mark on People- Thick organizations

Click here to read our second April 2017 Newsletter

April 2017 APBDRF Newsletter – UPenn, Million Dollar Bike Ride

Click here to read our April 2017 Newsletter

October 2016 APBDRF Newsletter – 2016 NYC Marathon Fundraiser matching grant opportunity

Click here to read our October 2016 Newsletter

September 2016 APBDRF Newsletter -Jo, Chlo and DieGO Run for APBD Research – NYC Marathon 2016

Click here to read our September 2016 Newsletter

Summer 2016 APBDRF Newsletter -Penn Medicine update-MJGH produces New APBD videos- APBD/Kindsight upcoming events

Click here to read our Summer 2016 Newsletter.

July 2016 newsletter – NEW LESSON! APBD: Adult Polyglucosan Body Disease

Click here to read our July 2016 Newsletter.

June 2016 newsletter – APBD Grant news

Click here to read our June 2016 Newsletter.

May 2016 newsletter (ii)- “LIFE THROUGH A LENS” (Short Documentary on Robert Zuckerman and APBD) at the Los Angeles Reel Film Festival- wins first prize

Click here to read our second May 2016 Newsletter.

May 2016 newsletter- We Got an Offer We Couldn’t Refuse!

Click here to read our May 2016 Newsletter.

April 2016 newsletter (iii)- RARE Patient Advocacy Symposium – Join us!

Click here to read our third April 2016 Newsletter.

April 2016 newsletter (ii)- Million Dollar Bike Ride

Click here to read our second April 2016 Newsletter.

April 2016 newsletter- APBD Research Foundation honors Dr. Salvatore DiMauro

Click here to read our April 2016 Newsletter.

March 2016 newsletter (ii)- APBD Research Foundation and Univ of Penn, Million Dollar Bike Ride

Click here to read our second March 2016 Newsletter.

March 2016 newsletter -APBDRF documentary “Life through a Lens” world premiere at Manhattan Film Festival

Click here to read our March 2016 Newsletter.

February 2016 Newsletter -APBD joins Penn Medical MDBR

Click here to read our February 2016 Newsletter.

Summer 2015 newsletter – 200 APBD Patients Urgently Needed to Enroll in Registry

Click here to read our summer 2016 Newsletter.

Winter 2015 newsletter – Can “LaTKE” cure APBD?

Click here to read our Winter 2016 Newsletter.

Fall 2015 newsletter – Open Letter

Click here to read our September 2015 Newsletter.

May 2015 newsletter – 11th Annual Scientific Advisory Board Meeting

Click here to read our May 2015 Newsletter.

March 2015 newsletter – What you can do

Click here to read our March 2015 Newsletter.

Winter 2014 newsletter – 2nd Mutation Discovery

Click here to read our Winter 2015 Newsletter.

Fall 2014 newsletter – APBD/ KindSight ® – “Be a Hero”

Click here to read our Fall 2014 Newsletter.

Summer 2014 Newsletter – APBD/ Kindsight®

Click here to read our Summer 2014 Newsletter.

May 2014 Newsletter – Opening of the APBD Registry

Click here to read our May 2014 Newsletter.