We’re beyond excited to announce our latest initiative, the 30 Day Spark! This is your chance to unleash your passion, connect with an amazing community, and make a real difference in the lives of individuals and families affected by CLOVES Syndrome.
What is the 30 Day Spark?
The 30 Day Spark is a unique fundraising campaign that empowers you to take the reins. You get to design your own 30-day challenge – anything that ignites your spark! Whether it’s a fitness goal, a creative endeavor, or a personal growth journey, the possibilities are endless.
Why are we doing this?
In the past, we’ve participated in the Million Dollar Bike Ride to fundraise for CLOVES research with great success. This year we are trying something new that champions all kinds of sparks, not just physical ones. Our goal is to raise $20,000 to support CLOVES Syndrome Community’s work to Amplify the patient voice. These funds will enable CSC to champion the needs of the CLOVES community through activities such as:
- Hosting the PIK3CA Related Conditions Research Round Table, a bi-monthly meeting for researchers and scientists to discuss their work alongside PROS patient advocacy organization leaders, furthering research and fostering collaboration.
- Collaborating with researchers like Bryan Sisk, Anna Kerr, and others who are working to ensure the voice of CLOVES patients are not just heard, but actively incorporated into bodies of research that could result in real positive impact to our community’s quality of life.
- Consult with pharmaceutical companies who are developing treatments for PROS conditions, ensuring the needs of our community are accounted for in trial design.
- Oversee the CLOVES Patient Registry, to conduct a prospectively planned and efficient natural history study that will result in a more comprehensive understanding of the disease and its course and pace over time.
How can YOU get involved?
- Create your challenge: What are you passionate about? What have you always wanted to try? Now’s the perfect time to pursue it!
- Join the team: Connect with friends, family, or colleagues to embark on this journey together. Teamwork makes the dream work, and it’s more fun! Then join up by going to https://givebutter.com/CSC_30DaySpark, and clicking Fundraise With Us
- Fundraise for CLOVES Syndrome Community: Turn your challenge into a force for good by sharing your unique campaign link as you update your network on your challenge progress all month long.
- Share your journey: Inspire others by documenting your progress and sharing your experiences on social media using the hashtags #30DaySpark and #CSC30DaySpark.
In Search of Matching Donors!
To help us reach our goal faster and generate even more excitement, we’re seeking matching donors! If you or someone you know is interested in amplifying the impact of every donation, please reach out to us. Your generosity can make a huge difference!
Ready to Spark Change?
Visit https://givebutter.com/CSC_30DaySpark to sign up, create your challenge, and start fundraising today.
We can’t wait to see the incredible things you’ll achieve during the 30 Day Spark! Together, we can make a lasting impact on the CLOVES Syndrome community.