Connective Tissue Coalition

04/30/2026

🎉 We Did It! An enormous THANK YOU for the first annual 'We Are CTC 5K Run for Research' in Hampton Beach, NH! 🎉

What an incredible day on April 25th as we gathered at the Hampton Beach Seashell Stage State Park to run, walk, and raise awareness for connective tissue disorders (CTDs)!

To our amazing attendees: Thank you to every runner, walker, and virtual participant across the U.S. who joined our mission. Your participation and generosity directly support the Connective Tissue Coalition's 'Research Drive for 2025 and Beyond' and our efforts to advance scientific discovery for Ehlers-Danlos, Marfan's, and Loeys-Dietz Syndromes!

To our dedicated volunteers: A huge shoutout to our volunteers—especially our wonderful Race Director, Lynnette Vaillancourt—who made this inaugural 5K a massive success! Your hard work, enthusiasm, and support on Saturday were truly invaluable. 🙌

To our incredible sponsors and special guests: We extend our deepest gratitude to all our event sponsors and those who contributed to our silent auction, including Dr. Paldeep Atwal and author Diana Jovin. Your commitment is vital in improving the lives of those affected by CTDs.

We are so grateful for our community! Stay tuned for more photos from Lynnette Stebbins Photography coming soon on our website!

04/28/2026

📣Join our EDS Awareness Month virtual watch party featuring the powerful film COMPLICATED Saturday May 2nd, from 2-4pm EST. This viewing will include a post film discussion with families from

Tickets on Eventbrite are just $3 USD! And available to view worldwide. Join this special virtual watchparty and see why people are saying, "it's powerful and heartwrenching". And "made me cry".

🔗Link to register: https://bit.ly/complicatedCTC
We'd really love for this to reach a wider audience, please share!

04/25/2026

We want to take a moment to thank everyone that participated, donated, and volunteered; we couldn’t have done without you!

04/24/2026

🎉The Connective Tissue Coalition is hosting its first silent auction fundraiser to support research. Bids will close at 12:00 PM EST on Saturday, April 25th.

🙏Please help us reach our goal by donating, bidding, and sharing this post on your own social media channels.

🫶Bidding is now open...
https://givebutter.com/we-are-ctc-silent-auction-09fuyf

04/23/2026

THIS WEEKEND!
The first annual We Are CTC 5K Race for Research
🍰🍨🍪DESSERTS, DOCTORS & CTD DYNAMOS🍰🍨🍪
Come by and meet them all this FRIDAY NIGHT, April 24, 7-9 pm
Rose Room ballroom at Ashworth by the Sea, Hampton Beach, NH
Meet the professionals working so hard to make our lives better!
🎉🎉🎉Researcher Sara Strecker, Ph.D, Dr. Pradeep Chopra, Dr. Petra Klinge, Dr. Paldeep Atwal, Dr. Brendan McCann, “Disjointed” author Diana Jovin , Complicated - The Movie co-producer Donna Sullivan 🎉🎉🎉
--No rsvp needed, just come on by in the evening and mingle with your CTC Community, Doctors, Researchers, Advocates, and the Connective Tissue Coalition Board of Directors.
🏃🏿👨‍🦽🏃🏽‍♀️🚶‍♀️🏃‍♂️🖱️🏃‍♀️💻🏃🏾‍♂️📱🏃
SATURDAY SATURDAY SATURDAY
Walk, run, roll, stroll, & virtual, all are welcome!
Come together in community to fund science, spread awareness, and support those affected with EDS, Marfans Syndrome and Loeys-Dietz Syndrome.
​​https://runsignup.com/Race/NH/Hampton/WeAreCTC5K
When: 10 am Saturday, April 25, 2026
Where: Hampton Beach, NH
180 Ocean Blvd
AND A VIRTUAL RACE ONLINE
Start at the Hampton Beach Seashell Stage, Hampton Beach State Park, 180 Ocean Blvd, Hampton, NH

Learn more about the race and register for this fun & friendly event at the race page below or on our website!

https://runsignup.com/Race/NH/Hampton/WeAreCTC5K

Registration ends 10am Saturday morning, just before race time.
Can't wait to see you there!

04/21/2026

04/21/2026

Desserts & Dynamos PART 4: at the beautiful Ashworth by the Sea on Hampton Beach, NH in the Rose Room, Friday April 24, 7-9pm!

🍰🍨🍪 The night before our inaugural We are CTC 5K, we are so excited to host for you several doctors, advocates, and professionals who are completely dedicated to the cause of cutting-edge research and proper care of Ehlers-Danlos, Marfans, Loeys-Dietz and its rainbow of other CTD co-morbidities.
Meet and mingle the night before the race and get to know your community of care!

We will introduce you to a few of them in the days leading up to the race... THIS SATURDAY, 4/25, 10 am!! Have you signed up yourself and/or your team yet? You may do so right up to 10 am.

Walk, run, roll, stroll, & virtual, all are welcome!
https://runsignup.com/Race/NH/Hampton/WeAreCTC5K

Jon Rodis needs no introduction; he's the busiest man in the world of advocacy and support for all connective tissue disorders! Jon approached his own disability by helping others navigate their own. He created a website that offered resources for these misunderstood conditions, including a widely-circulated Disability Checklist. He then served as President of the Marfan Foundation’s Massachusetts Chapter and Chair of the Chapter’s Physicians Awareness Committee, and later began the Ehlers-Danlos and CTD New England/Massachusetts Support Group. Today, Jon is Founder, President & CEO of the Connective Tissue Coalition, https://www.connectivetissuecoalition.org/

Lynnette Vaillancourt is our We are CTC 5K Race Director and a member of the CTC Marketing Team. Lynnette has been a longtime volunteer in the connective tissue disorder space, serving as the NH EDS Support Group Leader, and she's a Rare Disease Advocate. She's the owner of Lynnette Stebbins Photography-- see her inspiring work here: https://www.facebook.com/lynnettestebbinsphotography/

Questions for this event or Race Day? Please reach out! [email protected]

Join us in the Rose Room ballroom from 7-9 pm on Friday 4/24! 🌹https://www.ashworthhotel.com

04/17/2026

Desserts & Doctors PART 3: at the beautiful Ashworth by the Sea on Hampton Beach, NH in the Rose Room, Friday April 24, 7-9pm!

🍰🍨🍪 The night before our inaugural We are CTC 5K, we are so excited to host for you several doctors, advocates, and professionals who are completely dedicated to the cause of cutting-edge research and proper care of Ehlers-Danlos, Marfans, Loeys-Dietz and its rainbow of other CTD co-morbidities. Meet and mingle the night before the race and get to know your community of care!

We will introduce you to a few of them in the days leading up to the race... just a week away!

Have you signed up yourself and/or your team yet?
🏃🏿‍♀️👩‍🦽🚶
Walk, run, roll, stroll, & virtual, all are welcome!
https://runsignup.com/Race/NH/Hampton/WeAreCTC5K

Dr. Paldeep Atwal is a board-certified clinical and medical biochemical geneticist who serves as medical director and physician for the Atwal Clinic in Palm Beach, FL, which specializes in EDS and CTDs. Notably for us, he has contributed to the discovery of two novel genetic connective tissue syndromes resulting from defects in the FLNA and AEBP1 genes. He has published extensively on human genetics, with over 100 publications to date and a number of book chapters. https://atwalclinic.com/

Dr. Brendan McCann is a Primary Spine Practitioner licensed in Maine and New Hampshire who aims to fill the "void of support for people with Hypermobility Spectrum Disorders and Hypermobile Ehlers Danlos Syndrome" in Northern New England. He offers comprehensive spine care and an informative website for patients and medical professionals alike. Seeing himself as a partner in care for his hypermobile and CTD patients, he also keeps an active, fun, and educational Instagram account. https://www.bhmccann.com/

Join us in the Rose Room 7-9 pm on Friday 4/24! 🌹https://www.ashworthhotel.com

04/15/2026

Great news for the film CTC supports 🩵 now you can help them, too, by pre-ordering on Apple TV! 📺

We have great news! On May 19 during EDS Awareness Month COMPLICATED will be offered on the premiere digital platform Apple TV!

This is a wonderful achievement, but we need the best possible placement so that the film will get the viewership that it deserves. Here's what you can do:

CALL TO ACTION 1: If the film gets enough pre-orders on Apple TV then it will get the highest possible placement on the platform, ensuring high visibility. Please pre-order now and share this call to action with others. It will help our cause immensely:
https://tv.apple.com/us/movie/complicated/umc.cmc.6u10itqj2ei16o26u1ofsptda

CALL TO ACTION 2: Distributors pay attention to IMDb ratings. Please, everyone, go the to COMPLICATED page and rate the film on IMDb with a "10" in the upper right hand corner of the page. We need over a hundred ratings to get positive traction with distributors. It only takes a few seconds:
https://www.imdb.com/title/tt19064024

Thank you!

04/14/2026

Help make our raffle & silent auction a success! Restaurant and hotel gift certificates are welcome as well as gift cards, sports tickets, memorabilia and gift baskets. Contact our Race Director, Lynnette Stebbins using the email and phone number in the poster. And we'll see you on race day! Saturday, April 25, 10-12 at Hampton Beach Bandshell, NH. Can't make the race? Support your CTC community with a contribution to our raffle and silent auction. Call Lynnette today!

04/13/2026

Desserts & Dynamos PART 2: at the beautiful Ashworth by the Sea on Hampton Beach, NH in the Rose Room, Friday April 24, 7-9pm!

🍰🍨🍪 The night before our inaugural We are CTC 5K, we are so excited to host for you several doctors, advocates, and professionals who are completely dedicated to the cause of cutting-edge research and proper care of Ehlers-Danlos, Marfans, Loeys-Dietz and its rainbow of other CTD co-morbidities.

Meet and mingle the night before the race and get to know your community of care!

We will introduce you to a few of them in the days leading up to the race... just a week-&-1/2 from now! Have you signed up yourself and/or your team yet?
Walk, run, roll, stroll, & virtual, all are welcome!
https://runsignup.com/Race/NH/Hampton/WeAreCTC5K

Sara Strecker, Ph.D. is a Hartford HealthCare senior scientist leading the research at Hartford HealthCare Bone & Joint Institute who understands the challenges of EDS firsthand. And lucky for us all, her goal to help those living with EDS and related disorders. See here to learn more about her previous research: https://www.researchgate.net/profile/Sara-Strecker-2 And read more here about her plans for the future: https://giving.hartfordhospital.org/2022/06/09/saras-story/

Diana Jovin sits on the CTC Board of Directors and is the editor and co-author of Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders, an effort she embarked on with her daughter who is living with hEDS. https://www.kobo.com/us/en/ebook/disjointed-1

Donna Sullivan is a pioneering advocate who sits on the CTC Board of Directors, The Coalition Against Pediatric Pain and Merlin’s Kids Service Dogs, and a member of The AHEAD Coalition for The Ehlers-Danlos Society. She is also the consulting producer on the documentary film, Complicated, an exploration of the EDS experience by Open Eye Pictures. https://openeyepix.org/complicated

Join us in the Rose Room ballroom from 7-9 pm on Friday 4/24! 🌹https://www.ashworthhotel.com