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Seth Rotberg

Rare Disease Advocate and Motivational Speaker

Podcasts

  • Receiving a Rare Disease Diagnosis

  • Help4HD Podcast

  • Navigating Genetic Disease Testing with Seth Rotberg

  • The Decision to Get Tested for Huntington’s Disease and How It Changed Seth Rotberg’s Life

 

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Another successful talk at @brandeisuniversity earlier this week where I spoke with undergraduate and graduate students about my patient journey. The students had some great questions and it’s talks like these that keep me hopeful and motivated to stay involved in the rare disease space. Until next time! #rarediseaseadvocate #genetictesting #inspireothers #publicspeaker #onedayatatime #ontothenextone #huntingtonsdisease #powerofyoungpeople #research
Couldn’t have asked for a better time last week in Miami with some of my cool colleagues. #inspireothers #whichwaythatway #miamibeach #makeadifference #runningonthebeach #thatsunrisetho #warmweather
You’ll always be apart of my story and journey. Six years gone, but never forgotten my friend. 5/31/91-1/21/13 #jake4ever #tatooed #partofthejourney #liveinthemoment #thatsmiletho
Life is all about having fun right? #whynot #tbt #nye2018 #daboys #whiteboydancing #thatsmiletho #weouthere #newyearsameme #liveinthemoment
2018 was full of many amazing opportunities and adventures. Had the chance to do a #tedxtalk, explored Costa Rica, participated in an observational trial, officiated my friend’s’ wedding, and moved to DC for a job working in the rare disease space. Looking forward to 2019 and already have several goals I’m excited to tackle in the new year! #inspireothers #bestnine2018 #costaricalife #conqueryourfears #motivationalspeaker #puravida #raredisease #healthadvocate #fortheyouth #lifegoals #newyears2018 #hdyo #curehd #huntingtonsdisease
Official proof that my head was shaved for #huntingtonsdisease. Merry Christmas and happy holidays everyone! #morethanrare #raisingawareness #fortheyouth #holidayseason #hdyo #baldeagle #headshaved #foragoodcause #pleasegrowbackfast #shorthairdontcare
About two weeks ago I had the opportunity to share my story in front of the @sanofi research team. I am excited about the direction we are moving in research and making sure the patient’s voice is being heard throughout the process. #cureHD #tbt #publicspeaking #inspireothers #rarediseaseawareness #huntingtonsdisease #fortheyouth #powerofyoungpeople #shareyourstory #makingadifference #weirdlegpose #manspreading
Read below to learn about how you can see me shave my head bald next week for #huntingtonsdisease #coldwinterchallenge #hopemyhairgrowsback #Repost @hdyofeed with @get_repost ・・・ Want to see HDYO’s Board Member, @srotberg15 get his head shaved by HDYO’s own @traininglindsay ????? All we have to do as a community is raise $1,000 for one scholarship to HDYO’s Young Adult Congress in 2020 and we’ll live stream the whole thing. Donate here: https://en.hdyo.org/eve/donate MAKE SURE YOU PUT “SHAVE FOR HD” or “SETH GOES BALD” in the memo line so we can track it. . The big shave is happening in exactly 1 week so let’s get fundraising!!!! #unitethefight #hdyo #thebigshave #fundraising #charity #fortheyouth
It’s about conquering your fears: I’m not the greatest swimmer and almost drowned as a kid, yet my buddy @actionjackson1738 pushed me outside my comfort zone to go surfing. With his constant encouragement, I was able to stand up on the board (once) and it was such an amazing feeling. Sometimes you need a bit of a push from friends when facing your fears head on. #inspireothers #tbt #overcomingadversity #surfing🏄 #puravida #costaricalife #conqueryourfears #sunsetview
Had a great time speaking last Friday at the 2018 New England Regional Genetics Group Annual Meeting. I highlighted the importance of working with a genetic counselor when deciding whether or not to test. Their role makes the process easier and more manageable, while providing you with the proper resources. Looking forward to the next opportunity! #genetictesting #rarediseaseawareness #inspireothers #publicspeaker #geneticcounseling #patientadvocate #shareyourstory
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