J.D., M.A. Strategic Public Relations. Executive Director of @TANGO2research #family #fashion #food #fundraising #philanthropy
From OC Cali, now OC Florida
Joined February 2009
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I’m attending the 2026 #NORDSummit, Oct. 25–27 in Washington, DC! Will I see you there? Join leaders from across the #RareDisease community as we put patient partnership into action and lead the next decade of rare disease progress!
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Honored to be a part of this along with @NoyMari1965 to share @Sammy50223077 story and keep his memory alive. ❤️
We are excited to share that the poster abstracts from the 2026 TANGO2 Family Conference have been published in Therapeutic Advances in Rare Disease.
View the publication at journals.sagepub.com/topic/c…
#TANGO2ResearchFoundation
#TANGO2FamilyConference
Ann Geffen retweeted
We’re thrilled to share that several TANGO2 Research Foundation (T2RF) leaders have been selected as mentors in national rare disease initiatives — helping empower other organizations and strengthen the global rare disease community.
#TANGO2ResearchFoundation
Honored!
Congratulations and Thank to Ann Geffen on her 5-Year Anniversary with the TANGO2 Research Foundation!!
🔗 Read the new blog post here: lnkd.in/eZyHSqeT
#TANGO2ResearchFoundation
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Ann Geffen retweeted
Forgot to post this last week, but it's a cool story worth sharing. TANGO2 deficiency disorder in a 61-year-old! The story continues... @TANGO2Research
sciencedirect.com/science/ar…
Feeling so grateful to be here this week. I’m inspired and invigorated to reach new heights for our @TANGO2Research families!
We're leaving the #RareAsOne Network 2025 Meeting energized by powerful conversations + new connections! Participants shared examples of patient-led #RareDisease collaborations that are moving us closer to treatments and cures across diseases. Thanks to all who joined! #Patients
ALT large group outdoors on a sunny day in front of palm trees
It’s been an incredible week at the @ChanZuckerberg Rare As One Network Science in Society Meeting. Inspiring and invigorating to say the least! Looking forward to reaching greater heights and making more progress for rare disease families.
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Girl with the balloon I get. This I don’t.
A banana duct-taped to a wall — a conceptual artwork by Maurizio Cattelan titled "Comedian" — sold to a crypto entrepreneur for $6.2 million with fees at Sotheby's contemporary art auction on Wednesday. nyti.ms/3V4upiX
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This little lady stole my heart when I got a chance to meet her in person this past summer at the @TANGO2Research family conference.
🌟 Meet Heloisa, a courageous 6-year-old TANGO2 Warrior from São Paulo, Brazil! 🌟
Heloisa’s joy for life shines brightest when she's in the water, swimming her heart out at the club pool. When she's not in the water, you'll find her dancing up a storm or whipping up sweet t ...
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The work that you do inspires so many patient led orgs like @TANGO2Research. Keep it up…we’re watching with so much admiration.
How cool was it to see I AM ALS represented on stage last night at the DNC? We’re so proud of the work this community is doing together. In case you missed it, you can watch Brian and Sandra’s remarks in full: youtube.com/watch?v=Qw4AD9Ds…
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Ann Geffen retweeted
Brian and Sandra are the epitome of hope.
When Brian was diagnosed with ALS, he turned tragedy into action by launching @iamalsorg and leading a movement to find a cure.
I’m inspired by these two—and after you hear their story at the @DemConvention, you will be, too.
Still thinking about the 2024 @TANGO2Research Conference. I already miss seeing everyone and the dynamic energy everyone brought! This group defines passion and purpose for me. #rarediseaseadvocate #tango2 #tango2conference
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Well deserved @Sarahelegans! Congratulations! 🎊🎉🍾
Congrats to @Sarahelegans for being one of the inaugural class of TANGO2 Emerging Investigators! @TANGO2Research @Pathology_URMC @URNeuroscience
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Just finished up an amazing @TANGO2Research family conference. When patient families, researchers, clinicians, and caregivers collaborate, we move mountains.
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I was first introduced to the rare disease community when I started my role with @TANGO2Research in 2020. I've been hooked since! Today is February 29th, the rarest day of the year, and it is no coincidence that it is Rare Disease day. Today, I honor my work fam.
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Ann Geffen retweeted
📣 Patients are experts in their disease area
We’re celebrating all the collaborations between #RareDisease patients + the medical & scientific communities
#RareDiseaseMonth #RareAsOne
ALT Collage of photos
My first grader just asked me, what the difference between a subscriber and follower. #RaisingGenerationAlpha.
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