October 15, 2019
Dear Friend of CLOVES Syndrome Community: CLOVES Syndrome Community’s mission is to improve the quality of life of people living with CLOVES Syndrome through support, research and education. CLOVES is caused by a genetic mutation in PIK3CA and affects multiple systems of the body. Currently there is no cure for CLOVES and there are limited non-surgical treatment options. We are hopeful about progress towards potential drug treatments for our loved ones with CLOVES.
CLOVES Syndrome Community (CSC) serves as a crucial hub for people impacted by this disease – ensuring people living with CLOVES and their families have access to the resources and support that they need. Your financial support today, in any amount, will support CSC’s efforts to improve the quality of life of people living with CLOVES Syndrome.
Thanks to generous donors like you, we make big things happen for our tiny but mighty community. We cannot make an impact without your help! Over the past year, CLOVES Syndrome Community has:
• Donated $30,000 to Canaud Lab towards the development of animal models and testing PIKC3A inhibitors.
• Hosted our Fifth CLOVES Family Conference in June 2019 with over 150 people in attendance.
• Created and published our book for young children called Four Leaf Clovers.
• Held our 2nd CLOVES Family Camp in Greenfield, NH in the summer of 2019.
• Dispersed almost $5,000 in travel scholarships to nine families for Family Camp or our Conference to ensure that all families have access to our programs.
• Received an invitation to submit a full grant application for the Chan Zuckerberg “Rare As One” Research Network Initiative. Research awards are announced in November of 2019.
• Dispersed over $6,000 to five families through our Family Assistance Program, which helps to offset long term costs for CLOVES-related financial needs.
We know that more knowledge about this disease through research will help create a better quality of life for our loved ones. For the coming year, the CLOVES Syndrome Community Board has set the following goals:
• Develop, design and launch a Patient Registry for CLOVES and all PIK3CA Related Spectrum (PROS) conditions. We hope to bring this project to fruition in 2020.
• Collaborating and networking with other PROS organizations and researchers to advocate for non-surgical treatment options for CLOVES.
• Ongoing outreach to schools, organizations, hospitals and media outlets to spread awareness.
• Continue to fund and expand our programs like Back to School Bucks, which provides financial assistance related to apparel and shoe modifications, adaptive clothing and shoes in multiple sizes.
• Hosting a three-night session of CLOVES Family Camp at the end of June 2020.
• Continue to expand our research network, to ensure quality research is happening for people with CLOVES.
We are asking for your help to achieve these goals for the coming year. We greatly appreciate and rely on your financial support to continue growing our organization and fulfilling our vision, which is an improved quality of life for people living with CLOVES Syndrome. A tax-deductible contribution in any amount will make a significant impact on our community. We have a secure online donation system http://clovessyndrome.org/donate-now to process credit card donations.
Thank you for helping us make an impact! We are truly grateful for your support.
Sincerely, Kristen Davis, Executive Director and The CSC Board of Directors
Brenda Alexander, Emily Burgess, Adrienne Davis, Lindsey Godar, and Ashley McNamara