CLOVEs Syndrome Community

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

The application for CSC's 2026-27 Back-to-School Bucks program is open until June 30th. If you or your child with CLOVES...
06/15/2026

The application for CSC's 2026-27 Back-to-School Bucks program is open until June 30th. If you or your child with CLOVES are going back-to-school in the fall, don't miss your chance to apply.

CSC Back to School Bucks is a cash award which has been established to assist individuals impacted by CLOVES with expenses directly related to returning to school or college.

Back to School Bucks expenses may include custom-made or modified apparel including shoes, clothing and school uniforms, as well as adaptive equipment, which add up quickly this time of year.

Visit https://clovessyndrome.org/apply-for-back-to-school-bucks/ to learn more and apply.

To qualify for CSC Back to School Bucks, you or your child must be diagnosed with CLOVES Syndrome.

06/09/2026

What is CLOVES Syndrome? CLOVES is an acronym for the list of common features associated with this ultra-rare, non-hereditary genetic syndrome:

🍀 Congenital

🍀 Lipomatous

🍀 Overgrowth

🍀 Vascular anomalies

🍀 Epidermal nevi

🍀 Scoliosis or Skeletal anomalies

CLOVES Syndrome is the result of a mutation in the PIK3CA gene that occurred in utero. Because of this, it falls under an umbrella of conditions called PROS (PIK3CA Related Overgrowth Spectrum) There are very limited treatment options for people with PROS conditions and the treatments that do exist don’t work for everyone.

CLOVES Syndrome Community is a 501(c)3 non-profit dedicated to improving the lives of those affected by CLOVES and PROS through support, education, and research. To learn more about our organization, vision for the future, and accomplishments so far, visit www.clovessyndrome.org

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!
âś… Give $10 today
âś… Share our post with your network
https://givebutter.com/CSC_30-day-spark-2026

Together We Spark. Together We Thrive.

đź’ˇ 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!

âś… Give $10 Today

âś… 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

âś… Give $10 today

âś… 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.

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