CLOVEs Syndrome Community

CLOVEs Syndrome Community CLOVES Syndrome Community - Support, Research and Education

CLOVES Syndrome Summit continues June 13th with a presentation by Jodi St Aubin, a school councilor and adult with CLOVE...
06/03/2026

CLOVES Syndrome Summit continues June 13th with a presentation by Jodi St Aubin, a school councilor and adult with CLOVES!

Jodi will be discussing how to prepare for and approach conversations around accomodations for your child or yourself in the educational envionrment. This talk is perfect for CLOVES caregivers, of course, but advocating doesn't stop after high school, and adults with PROS/CLOVES will find insights to help them approach their own conversations too.

After the presentation, join us in our private room on Gather.town to connect and socialize.

And our event sponsor, Relay Therapeutics will be there to say hello, and answer your questions about their ongoing clinical trial for patients with PROS and vascular anomalies.

If you registered for a prior session, you're already signed up for June (and all future sessions)! There's no need to register again.

But if you haven't yet signed up, now is the time to make sure you don't miss Jodi's presentation, or the chance to connect with other CLOVES Syndrome patients and families! Register at https://givebutter.com/CLOVES_Summit_2026 (or visit the link in our bio on IG)

Links for the June sessions will be sent to registered attendees one week before, and the day before each session.

06/01/2026

CSC is hosting our first ever Mascot Match-up in search of the first official mascot for CSC for the 2026–27 fiscal year. Community members can sign up their pets as Mascot Matchup contenders. Then friends and family vote for their favorite pet by visiting the Mascot Match-up campaign, clicking on the mascot of their choice, and making a donation before voting closes on July 27 at 8 AM Pacific time.
Two pets will move onto the final round: the pet with the most individual donations and the pet who has raised the most dollars. Then, the CSC Board of Directors will decide the final winner. The winner will be notified by August 1, and announced to the community as part of our CLOVES Syndrome Awareness Day online celebration on August 3. They will be featured on CSC’s social media and in our newsletters throughout the year. We can’t wait to see everyone’s pets on display and find out who the 2026-27 mascot will be!

Visit www.givebutter.com/CSC_MascotMatchup, or follow the link in our bio, to learn more, and join in the fun.

We are in the final days of 30 Day Spark, and we are sparking AWARENESS! 🍀CSC's children's books, Four Leaf Clovers and ...
05/28/2026

We are in the final days of 30 Day Spark, and we are sparking AWARENESS! 🍀

CSC's children's books, Four Leaf Clovers and Incredible You, help kids navigate life with CLOVES, and bring awareness to their loved ones, friends, and family. Your donations help CSC print and distribute these books to families and classrooms.

Be the Spark!
✅ Give $10 today
✅ Share our post with your network
https://givebutter.com/CSC_30-day-spark-2026

Together We Spark. Together We Thrive.

💡 Don't forget: thanks to the Willems Family's generous matching pledge, your donation will have double the impact!

Week 3 sparks PROGRESS! 🚀This community is powering progress by supporting CSC’s work with researchers and pharmaceutica...
05/21/2026

Week 3 sparks PROGRESS! 🚀

This community is powering progress by supporting CSC’s work with researchers and pharmaceutical partners. We’re ensuring that our community's voices are at the center of every clinical trial and treatment design.

"Since starting the medication and clinical trial, our daughter has more energy, and her lymphatic malformations have shrunk. It's so easy to see she feels better than she once did, and it has been such a blessing to watch her flourish!"
--Mom of a 10-year-old with CLOVES

Be the spark!

✅ Give $10 Today

✅ Share this post with your network

https://givebutter.com/CSC_30-day-spark-2026

✨Together we spark. Together we thrive. ✨

05/18/2026

CLOVES Syndrome Community's mission is an improved quality of life for those affected by CLOVES through support, education, and research—put another way, we strive to

🍀 Create opportunities for connection across our community,

🍀 Drive awareness of CLOVES worldwide, and

🍀 Collaborate with scientists and industry to better understand CLOVES and develop new treatment options.

We envision a future where people with PROS conditions live long, full, vibrant lives, with access to excellent medical care.

In the last twelve months, CSC programs have touched over 40 families. We provided over 30 hours of consultation to researchers and the pharmaceuitcal industry in support of improving the quality of life for those with CLOVES Syndrome. And we granted roughly $10,000 of support to individuals and families.

None of it would be possible without our thriving community of people with CLOVES, their friends and families, and all our incredible donors. We're on a mission and we aren't anywhere near finished. Thank you for your continued support. 🍀💚💪 Learn more and join the cause on our website: www.clovessyndrome.org

It's week 2 of 30 Day Spark, and together we're sparking CONNECTION!Betsy’s Camp & Retreat is CSC's annual retreat where...
05/15/2026

It's week 2 of 30 Day Spark, and together we're sparking CONNECTION!

Betsy’s Camp & Retreat is CSC's annual retreat where people with CLOVES and their families find true connection and rest.

"Watching Chloe play with her new CLOVES buddies was our favorite memory from Betsy's Camp. ... Having a child with a rare disease can feel so isolating, and Betsy's Camp is exactly what we needed!"
-- Valerie Beckstrand, mom of Chloe (9)

Be the spark: help us fund this vital space for our community: https://givebutter.com/CSC_30-day-spark-2026

✅ Give $10 today

✅ Share this post with your network

Together We Spark. Together We Thrive.

05/13/2026

Sometimes you’ve just gotta pivot!
30 Day Spark launched May 1st, and we are so grateful to those of you who have contributed in ways big and small already. But we also recognize that times are tough right now, and donating large amounts or participating in your own challenge might feel out of reach. So we’re changing the focus of 30 day spark just a little bit, to focus on the big impact of small gestures.
We are asking our community to donate $10, and share this post with just 10 friends - so simple! And if donating is out of reach, and all you can do is share this post to your stories, we will be so grateful just the same. 30 Day Spark is about building community as much as it is about raising funds.
To those of you who have already joined the campaign and created your challenges ( is decluttering her bookshelves by donating to little libraries near her! ) THANK YOU! We will keep cheering you on!
Finally, The Willems Family committed to a $10,000 match in support of 30 day spark, which is huge! Because of their generosity, every dollar donated has double the impact. We couldn’t be more grateful.
Visit the link in our bio (https://GiveButter.com/CSC_30-day-spark-20206) to learn more about the campaign, how your donations help CLOVES families, and to donate. 💚 Together we Spark. Together we Thrive. 🍀

05/05/2026

The Willems Family has pledged $10,000 in matching donations to our 30 Day Spark campaign in honor of their grand daughter, Lindsay Weslow!
So what does that mean?
A matching pledge is when a family promises to match each donation made to the campaign. Effectively, every donation made between now and until we reach $10,000 will be DOUBLED! When you donate $10, BOOM! It transforms into $20 of impact, like magic! (queue the sparkles!) ✨
We know that times are tough right now, and the weight of the world can feel a bit heavy. We are so grateful to the Willems Family for their incredible generosity--they've lit the Spark! Now we get to spread the light.

We have a simple "10 for 10" goal to keep the spark alive:
✨ Give $10 today.
✨ Ask 10 friends to join you by giving $10 of their own.

That’s it. It’s about the power of the collective and the strength of our connections.

Don't wait to support your favorite Community Spark! Visit https://givebutter.com/CSC_30-day-spark-2026 to donate $10 and keep the spark going.

Whether your a caregiver, a kiddo, or an adult with CLOVES, we would love to see you at Betsy's Camp! There's something ...
05/03/2026

Whether your a caregiver, a kiddo, or an adult with CLOVES, we would love to see you at Betsy's Camp! There's something for everybody at camp. Make sure to register before May 10th to secure your spot!
Register here: https://zebra-crossings.campbrainregistration.com/

30 Day Spark is a "choose-your-own-adventure" awareness + fundraising campaign. For 30 days, members of the CLOVES commu...
05/01/2026

30 Day Spark is a "choose-your-own-adventure" awareness + fundraising campaign. For 30 days, members of the CLOVES community commit to a challenge that excites them—whether it's daily meditation, training for a 5K, finishing an art project, or learning a new skill. As they push themselves and share their progress, their friends and family support their journey by donating to CLOVES Syndrome Community (CSC) - https://givebutter.com/CSC_30-day-spark-2026

Our goal for 2026 is to raise $20,000. These funds are the lifeline for our community's most vital programs, fueling CSC’s mission to improve the lives of those with CLOVES Syndrome:

Together We Spark Connection: Your support funds programs like Betsy’s Camp & Retreat, our annual retreat where people with CLOVES and their families can connect, share experiences, and relax in beautiful New Hampshire.

Together We Spark Awareness: You help us print and distribute our children’s books, Four Leaf Cloves and Incredible You, to kids, classrooms, and libraries. This drives awareness and helps kids with CLOVES Syndrome navigate stigma with confidence.

Together We Spark Progress: You power our collaboration with researchers and pharmaceutical partners, ensuring the patient voice is at the center of clinical trial designs and treatment development.

Together we spark. Together we thrive.
Learn more and donate here: https://givebutter.com/CSC_30-day-spark-2026

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