As 2024 comes to a close, I want to express my sincere gratitude for your unwavering support. Thanks to your generosity, we’ve made significant strides in our mission to fund research and development, provide education and awareness and help kids impacted by heritable connective tissue diseases, including Vascular Ehlers-Danlos Syndrome (VEDS), Marfan syndrome, and Loeys-Dietz syndrome.
These conditions affect the body’s connective tissues, which provide strength and support to various structures like skin, joints, blood vessels, and organs.
- Marfan Syndrome primarily affects the heart, blood vessels, eyes, and skeleton. It can cause aortic enlargement (aneurysm), which can lead to dissection or rupture.
- Loeys-Dietz Syndrome shares some features with Marfan syndrome but is often more aggressive, with a higher risk of aortic aneurysms and other vascular problems
This year, Chalkbird Inc. focused on several key areas, achieving remarkable progress:
- Supporting The Marfan Foundation: We proudly contributed funds to The
- Marfan Foundation, a leading organization dedicated to research, education, and support for individuals and families affected by Marfan syndrome and related conditions.
- Advancing Drug Development: We continued crucial discussions with leading pharmaceutical manufacturers to regarding the development of life-saving medications for these devastating diseases. These conversations are vital in translating research into tangible treatments.
- Engaging with Regulatory Bodies: We met with representatives from the FDA, advocating for streamlined pathways for drug approval and increased attention to the urgent needs of the connective tissue disease community.
- Amplifying Our Voice: We engaged with New Jersey lawmakers, urging them to support policies that promote research and access to care.
- Building Community: We participated in the first series of support groups, providing a vital space for individuals and families to connect, share experiences, and find mutual support. More info coming soon!
- Reaching Thousands: Our Chalkbird Car continued its journey, interacting with thousands of people and raising awareness about these often-misunderstood conditions.
Your contributions have made all of this possible. Every dollar donated brings us closer to a future where individuals with VEDS, Marfan syndrome, Loeys-Dietz syndrome, and other heritable connective tissue diseases can live longer, healthier lives.
We are deeply grateful for your partnership and look forward to continuing this important work together in 2025.
Sincerely,
Daniel Sperry
Chair, Chalkbird Inc.