Newsletter Archive
August 2024 Research highlights; two weeks to our virtual Conference; MDBR research funding…and more!
Click here to read our August 2024 APBDRF Newsletter
July 2024 You’re invited! Join us on Sept. 18-19…
Click here to read our July 2024 APBDRF Newsletter
June 2024 Record-Breaking MDBR Campaign; Insightful Podcasts; … and more!
Click here to read our June 2024 APBDRF Newsletter
May 2024 Missed it? Recording of “Swallowing & Speech Disorders in APBD” discussion…and more!
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April 2024 Why We Participate in the MDBR
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March 2024 Join us for the Million Dollar Bike Ride; new rare disease book;… and more
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February 2024 Rare Disease Day; Million Dollar Bike Ride; Research Highlights;…and more!
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February 2024 Duke University and Research Fund of the Hadassah Medical Organization Scientists Awarded MDBR Grants
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January 2024 Research Highlight; Snag Your Free Sunglasses for Rare Disease Day;…
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December 2023 Q&As with APBD researchers, season’s greetings…and more!
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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…
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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…
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July 2023 Increasing access to diagnostic tests, upcoming Chats, and more!
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June 2023 🚴♀️$97,000 Raised for APBD Rare Disease Research!
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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
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March 2023 Access the Guideline on the go; June 10 — MDBR for rare disease research…
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February 2023 Rare Disease Day; a Mother’s Perspective…and more!
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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!
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October 2022 A patient story; upcoming Patient and Caregiver Chats; … and more!
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September 2022 A patient story; the power of Facebook fundraising; … and more!
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August 2022 MDBR’s APBD research funding opportunity; research highlight;…and more!
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July 2022 Remembering one of our own; summer events; … and more!
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June 2022 Newsletter – Highlights from our MDBR campaign; physicians’ directory resource; and more…
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May 2022 Newsletter – A successful conference; half-way point for the Million Dollar Bike Ride fundraiser, and more…
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April 2022 Newsletter – In less than ONE month…
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March 2022 Newsletter – Remembering special days, Research highlight, and Save the DATES!
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February 2022 Newsletter – Rare Disease Day, RAO Grant Update, Special Patient Chat, and More!
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January 2022 Newsletter – Happy New Year, funding promising research, community congress…
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December 2021 Newsletter – Top Articles of 2021, Amazon Smile and MORE!
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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!
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August 2021 Newsletter – APBD in the news, 2020–The Year in Review…and more!
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July 2021 Newsletter – A New Prevalence Study, One Young Man’s Impact…
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June 2021 Newsletter – Thank you for the gift of research, Patient and Caregiver Chats…
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May 2021 Newsletter – Ride with us at the MDBR; explaining GBE1 mutations’ presentations…
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April 2021 Newsletter – Research Alert, Upcoming Events, and more!
Click here to read our second April 2021 APBDRF Newsletter
April 2021 Newsletter – Research Alert
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March 2021 Newsletter – Research Announcement, Upcoming Events, and more!
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February 2021 Newsletter – Rare Disease Day
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January 2021 Newsletter – Rare Disease Day
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December 2020 (ii) Newsletter -Most read articles in 2020
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December 2020 Newsletter – Giving Tuesday
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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
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Spring 2020 APBDRF Newsletter – Spring Update
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Winter 2020 APBDRF Newsletter – Winter Update
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Fall 2019 APBDRF Newsletter – Summer Update
Click here to read our Fall 2019 APBDRF Newsletter
Summer 2019 APBDRF Newsletter – Summer Update
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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
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February 2018 APBDRF Newsletter – Help us, help you!
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Fall 2017 APBDRF Newsletter – Giving Tuesday
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October 2017 APBDRF Newsletter – APBDRF attends NORD Breakthrough Summit in Washington, D. C.
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Summer 2017 APBDRF Newsletter – 2017 Marathon run
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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
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October 2016 APBDRF Newsletter – 2016 NYC Marathon Fundraiser matching grant opportunity
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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
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July 2016 newsletter – NEW LESSON! APBD: Adult Polyglucosan Body Disease
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June 2016 newsletter – APBD Grant news
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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!
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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
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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
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February 2016 Newsletter -APBD joins Penn Medical MDBR
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Summer 2015 newsletter – 200 APBD Patients Urgently Needed to Enroll in Registry
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Winter 2015 newsletter – Can “LaTKE” cure APBD?
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Fall 2015 newsletter – Open Letter
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May 2015 newsletter – 11th Annual Scientific Advisory Board Meeting
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March 2015 newsletter – What you can do
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Winter 2014 newsletter – 2nd Mutation Discovery
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Fall 2014 newsletter – APBD/ KindSight ® – “Be a Hero”
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Summer 2014 Newsletter – APBD/ Kindsight®
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May 2014 Newsletter – Opening of the APBD Registry
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Fall 2013 Newsletter – “What we are working on” & upcoming December 2013 meeting
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July 2013 Newsletter – March 2013 Meeting
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March 2008 Newsletter
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March 2007 Newsletter
Click here to read our March 2007 Newsletter.