Board member | Non-profit Leader | Consultant | Rare Diseases | Patient Advocacy I Former Executive Director NTSAD.
Boston, MA
Joined December 2013
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- Following425
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Myra and Matt followed their instincts and learned so much from you, Blyth, and your family. I love this quote: “We were learning that pain and love could coexist. We weren’t risking our hearts, we were expanding them.”
Charlie and I are honored to know and love this family and have held Havi in our arms numerous times; and to have watched as Myra and Matt found their way to this beautiful time with their girl. Myra's story. bostonglobe.com/2022/06/08/m… via @BostonGlobe
Kevin and Lisajane Romer honor their son Mathew’s memory every day with the meaningful initiatives undertaken by @MFRFoundation. I appreciate what we accomplished together @NTSAD and by partnering with so many others to benefit families affected by rare diseases.
Don't Miss the @MFRFoundation's 2022 "Sweetness and Laughter" Gala next Wed., April 27th, where NTSAD’s former Executive Director @SusanRKahn will be honored with the MFRF 2022 "See the Light" Award. Register now for the virtual event: bit.ly/38ZOfGY
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Sue Kahn retweeted
This #IWD, we are celebrating the achievements of women pioneers at LogicBio & in the broader #biotech space who have paved the way for future generations of women and girls to lend their vision and help build a healthier, more equitable society. bit.ly/3vyTSoW
Lysosomal disease and leukodystrophy investigators and researchers, take note! #RareDisease
NTSAD and partners @_CTSF_ and @BluGenesFdn are launching the next round of research funding for basic research, translational studies, or clinical studies projects for Tay-Sachs, Canavan, GM1, and Sandhoff diseases. Pre-application due Feb. 18, 2022. bit.ly/3q66xg4
Sue Kahn retweeted
USA today feeatured an amazing NTSAD family. Read about Jessie here.
msn.com/en-us/news/us/rare-d…
Support rare families this #GivingTuesday. bit.ly/3m3jz9k
My heart is full (but a tad sad) on my last day with @NTSAD. I’ve been so fortunate to work with a team that is 100% heart and passion; they’re all in for our @NTSAD families. Looking forward to the day when there are FDA-approved treatments #rarediseases
Such wonderful colleagues and friends who gathered together a few years ago! I think we were discussed planning a clinical trial for Late Onset Tay-Sachs & Sandhoff. @genome_gov @MassGeneralNews @SanofiGenzyme @NTSAD @SusanRKahn
Day 11 of Honoring Sue! @SusanRKahn led the Research Task Force and Board of Directors to expand NTSAD research initiatives to include newborn screening and early diagnosis. Make a gift to #ImagineandBelieve2021 in honor of Sue! bit.ly/2JEPJd1
#14daysofSueKahn
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Our @NTSAD communications team has surprised me with all these tweets, but I've loved seeing special moments from the past and people who mean so much to me and @NTSAD. Here I am with Dr. Ed Kolodny and @NTSAD's Diana Pangonis at the former @SanofiGenzyme Center. @SusanRKahn
Day 14 of Honoring Sue! During Sue Kahn’s tenure, she stewarded nearly $4 MM in research grants which were leveraged to $30 million in additional grants from other institutions and investments by industry to find effective treatments for Tay-Sachs, Canavan, GM1, and Sandhoff.
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Sue Kahn retweeted
We’ve received FDA Fast Track Designation for our industry-leading #GeneTherapy, AXO-AAV-GM1, for the treatment of #GM1 gangliosidosis. We’re working diligently to bring hope to children & families affected by this rare, terminal disease. Read more: bit.ly/3B2xZgE $SIOX
Okay - this is a little too much about me, but I love being seen with Molly and Maddie, two of the cutest girls I know! @NTSAD
Day 5 of Honoring Sue! Throughout @SusanRKahn's 14 years of leadership, she has always kept the voices of families front and center of every meeting, project, and collaboration. Join us as we honor Sue at #ImagineandBelieve2021! conta.cc/3mbM85L
#14daysofSueKahn
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Hope you’ll tune in on Oct 18 to hear my experienced colleagues share their helpful insights @RareDiseases #NORDSummit
Register for #NORDSummit to attend the session, "Advanced Fundraising: Developing Your Business Proposition and Engaging Industry" featuring speakers @SusanRKahn (@NTSAD), Marianne Clancy (@curehht), @BobRauner1 (@UlfUnited) and @MichaelZincone (@pfizer): bit.ly/3xUhToG
ALT Logo, text reading "Rare Diseases + Orphan Products Breakthrough Summit Virtual Summit October 18+19," "Advanced Fundraising: Developing Your Business Proposition and Engaging Industry." Headshots of each speaker & their titles/positions.
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Proud to be part of @BridgeBioPharma Patient Day and help raise awareness about #Canavan disease along with Ruby and her family.
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While going virtual is the right thing to do, I'm so so disappointed that I won't be seeing you in person, at least not on October 28th. At least you can now join us from anywhere in the world from the comfort of your home. Plus thanks to all our generous sponsors!
Register now for Imagine & Believe! Thurs., October 28, 7-8 p.m. EDT. Thank you to all our 2021 sponsors. conta.cc/3mbM85L
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Sue Kahn retweeted
#GM1 Type 1 is the most severe form of the disease. Children with Type 1 typically present symptoms around 6 months of age when development may begin to slow & muscles may become stiff/weak with an eventual loss of motor skills. Learn more: bit.ly/3ggI7uV @ASGCTherapy
Sue Kahn retweeted
"There needs to be a sense or urgency within the community and for researchers for treatment to be found." Cure Darian is streaming on the #GGSummit now with The Disorder Channel. #careaboutrare #raredisease @curegm1foundation #GM1Gangliosidosis #curegmi #GM1
Sue Kahn retweeted
It took 10 months for Embree's parents to get a diagnosis of #Sandhoff disease for their daughter. To read how an early diagnosis could have made a difference for their family and other rare families' journeys to diagnosis profiles, visit bit.ly/2YHYnPD
#MaketheRareDx
Sue Kahn retweeted
Today, we announced the dosing of the first Type I (early infantile) patient, the most severe form of #GM1 gangliosidosis, in our ongoing study of AXO-AAV-GM1 #GeneTherapy. We are continuing to screen and enroll Type I patients. More here: bit.ly/3E1taH7 $SIOX
Sue Kahn retweeted
Thank you to our partner @TayshaGTx for raising awareness of #TaySachsDisease!
September is #TaySachsAwareness month. Tay-Sachs disease is a rare, genetic neurodegenerative disorder of the central nervous system (CNS) that can impact children within the first few months of life and for which there are no approved therapies. Learn more.