Turning Fear into Focused Action

Imagine a moment of pure terror: your child lying unresponsive in a hospital bed for 56 hours, his mental status deteriorating rapidly due to an aggressive infection. Now, imagine realizing that not a single doctor or nurse knows the underlying condition that is contributing to your son's illness.

This was one family's reality just last month. This terrifying experience—facing a medical crisis with a team completely unfamiliar with CLOVES Syndrome—highlights the desperate and urgent need for our organization's mission. Read more of the Pelsinski Family's story below, and learn how CLOVES Syndrome Community is bringing focused action to our vision of an improved quality of life for people with CLOVES Syndrome into 2026 and beyond.

Two years ago, we were preparing for Stetson’s arrival. We spent 38 long, uncertain weeks being seen at Massachusetts General Hospital, preparing for the good, the bad, and the ugly with our doctors and family. We didn’t know what his future held.

Then, on September 6, 2023, Stetson was born—a fearless fighter from day one. He was the biggest baby in the NICU, and since then has overcome every challenge thrown his way with grit, determination–and a pain tolerance that is off the charts.

But the first year of his life was a testament to the exhaustion of a CLOVES family: 91 doctor appointments, two surgeries, 96 hours spent in the car, and six airplane rides to appointments. Trying to manage a household, a career, and care for our other children while navigating this medical maze is exhausting. It's compounded by the inappropriate questions and the harmful assumption that because Stetson "looks amazing," there is nothing wrong.

At six months old, we found the foremost patient advocacy organization for Stetson’s condition, CLOVES Syndrome Community (CSC). With it, we found a network of people who understand the fight we are in.

Stetson at the water park

2025: Achievements Built on Your Support

The exhaustion and fear we faced fueled our commitment. That is why this past summer, I joined the CLOVES Syndrome Community Board of Directors. As a parent to a child with CLOVES, I’m no stranger to feeling helpless in a hospital room, but I am committed to helping our organization grow financially and increase our outreach to help families with CLOVES Syndrome even more than we already do.

The vision of CLOVES Syndrome Community is simple: an improved quality of life for those living with CLOVES Syndrome. Our mission is to support, educate, empower, and improve the lives of those affected by this incredibly rare, but deeply impactful condition.

Because of generous donors like you, we made significant strides in 2025:

Expanded Connection: We partnered with Camp Korey to offer a summer camp experience for CLOVES families on the west coast of the United States for the very first time! This provided a vital space for patients and siblings to connect, share, and thrive.
Driving Research Forward: CSC was a featured voice at the International Drug Repurposing Conference, sharing our community's experience in the successful repurposing of Alpelisib (Vijoice) for PROS patients. Your stories are driving global medical change!
Shaping the Future: We consulted with Relay Therapeutics on the design and launch of their exciting clinical trial for Re-Inspire, a potential new medication treatment option. Our community is at the table, shaping the future of care.
Record-Breaking Support: Our Back-to-School Bucks program helped a record number of families ease the financial burden of the new school year, and our Family Assistance Program provided direct support to 10 families facing hardship.
Growing Our Impact: Our patient registry, a critical tool for researchers seeking to better understand the PIK3CA gene, grew by an incredible 55%, getting us closer than ever before to conducting a natural history study of CLOVES Syndrome.

2026: Our Plan to Bridge the Knowledge Gap

The crisis at Maine Medical Center—facing a medical team with zero knowledge of CLOVES—proves that our mission is far from over.

Your Giving Tuesday donation this year fuels important work already planned for the year ahead. With your help, 2026 will be a year of unprecedented growth in education, support, and clinical care:

In 2026, we are prioritizing closing this dangerous medical knowledge gap. We need to raise $150,000 to execute the following vital initiatives:

New Educational Series: We are putting the finishing touches on a year-long learning and connection series that you won't want to miss. We can't wait to share more details with you in the new year!
Mentorship & Connection: We are thrilled to launch the Young Adult Mentorship Program, providing connection to a previously underserved portion of our community.
Setting the Standard: We will be updating our CLOVES Syndrome Clinical Care Guidelines, ensuring that physicians around the world have access to the most current and comprehensive medical protocols to care for CLOVES patients.
And much more! Your support makes every new program and initiative possible, from updating our website, to hosting Betsy's Camp—and everything in between.

Stetson is a courageous, beautiful boy, and he deserves a world where his medical needs are understood. Every family affected by CLOVES Syndrome deserves the support and resources only the CLOVES Syndrome Community can provide.

We are already putting funds toward crucial family financial assistance, cultivating a thriving patient community, collaborating with clinicians, scientists, researchers, and the pharmaceutical industry, publishing educational books for children, funding medical research, and hosting a camp for families affected by CLOVES each year.

But we need your help to grow. There are so many opportunities to spread the word and develop critical resources that we simply cannot afford.

Please consider a generous gift today. Your donation is an investment that will create more family financial relief grants and essential educational programs that eliminate the fear and isolation felt by CLOVES patients and families.

You are investing in a better, safer, and more understood future for children like Stetson.

With heartfelt gratitude,

Megan Pelsinski

Member of the CSC Board of Directors

The Pelsinski Family for CLOVES Awareness Day

P.S. Stetson attended 91 appointments in his first year, spending almost four full days in the car just to get to them. Your donation is vital to funding our 2026 plan, which will ensure that the next time Stetson is in the hospital, the nurses and doctors will know exactly how to care for him. Help us raise $20,000 to bring CLOVES awareness to hospitals across the country.

Not sure what to donate? What about the cost of your next trip to the coffee shop?

Team CLOVES for Giving Tuesday

By Cloves Syndrome Community

Team CLOVES for Giving Tuesday

Supporting CLOVES patients and families in 2026 and beyond

Team Members