Get Involved

Fundraise and Events

CLOVES Community Heroes


We are thrilled to announce a new way for CLOVES friends and family to support our mission.  Join CLOVES Community Heroes and fundraise your way.  We will provide all the tools you need to raise funds and spread awareness for the CLOVES Syndrome Community through a brand new peer to peer fundraising platform (coming soon!).  No cape required!

Download the instructions on how to set up a page here

Fundraising and Events


Are you interested in helping our organization be strong and sustainable for many years to come?  If you answered yes, you’re in the right place!

How am I helping CLOVES Syndrome Community?

Thank you for your interest in raising funds to support CLOVES Syndrome Community. Our success depends on the initiative and dedication of supporters like YOU. Each dollar that you raise will help CSC in the development of possible treatment options and further understanding of the disease, as well as provide critical support services and information to our community. We are truly grateful for your interest in making an impact and look forward to working with you.   

What does CLOVES Syndrome Community do with the donations they receive?

Education – Our biennial Family Conference brings together patients, families and leading clinicians and specialists working on CLOVES Syndrome.  We maintain an up to date website with the latest information on CLOVES Syndrome – from medical information to coping with rare disease – for our community.  

Research – We have been actively funding CLOVES/PROS research since 2014 and we continue to collaborate and partner with new scientists all around the world.

Support – We offer an annual summer Family Camp – called Betsy’s Camp – in New Hampshire to offer our families fun, connection and respite.  We have created, printed and dispersed two books for children and teens living with CLOVES.  We provide medical travel grants to families in need, who travel many miles to find appropriate CLOVES care.   We provide grants to families in need, to help offset the cost of specialized footwear and adaptive clothing.  

Awareness – We work continuously to raise public awareness and generate additional support among individuals, community organizations, and the medical community. We participate in our annual awareness day on August 3rd as well as Rare Disease Day, held on the last day of February every year.  


Asking for support
One of the easiest things to do is to reach out to your friends and family and tell them why you care about CLOVES Syndrome Community. Tell your story about why this organization matters to YOU and your family. You can share our donate page with your contacts to encourage giving at any time of the year.

Set up a MightyCause page
MightyCause is an online fundraising platform that relies on peer to peer fundraising.  You set a fundraising goal and tell a story about why you are fundraising for CSC.  We love the MightyCause platform because we can keep our current organization goals and strategic planning up to date to share with our supporters.  Some examples of past fundraisers are We Love You Victor and Riley’s Rally for Research.

Employer Match Programs
Did you know that many employers will match your charitable donation?  This varies from company to company, so ask your employer or check their website. Find our organization by searching for “CLOVES” and “Maine”.  This is a great way to make an even larger impact for our organization!

There are many events you can hold as a fundraiser for CLOVES Syndrome Community.  We believe you can take what you love and turn it in to a fundraiser.  Love sports?  Hold a golf event!  Love wine?  Host a wine and cheese party at home.  Every event matters, whether it’s small or large!  You can find a full list of events and guidelines in our fundraising guide.  Some great examples from our community are Loaves for CLOVES and Addy’s Run

Facebook Fundraisers
Did you know that we receive 100% of the funds raised by Facebook fundraisers for CLOVES Syndrome Community?  Facebook takes zero fees.  Here’s a link to start a Facebook fundraiser for us for a birthday, Giving Tuesday or CLOVES Awareness Day.  

Shopping via Amazon
Sign up for Amazon Smile and select CLOVES Syndrome Community as your charity of choice.  We will recieve a small percentage of your sales as a donation.

Have an idea for an event or fundraiser?  Email us!  We’d love to hear from you.

Make a Donation

Your contribution will help our organization be strong and sustainable for many years to come.


“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
– Margaret Mead