Dear family and friends,

Funding = Research = More treatment options = Better quality of life.

Thank you for being a part of this equation. I am so very grateful for your generosity over the years. I graciously reach out again for your support. April is Sarcoidosis Awareness month. Please help me make a difference by donating to FSR and their great work. I’m excited to see what we can achieve together this year. Any amount makes a difference and has impact that is felt.

Sarcoidosis is a rare, chronic, inflammatory disorder that can damage any organ in the body. There is no known cure, and treatment options are limited and often ineffective. I was officially diagnosed in January 2013, and since then the disease has impacted multiple organs. I have tried many medications and infusion treatments, but the disease continues to cause difficult symptoms, including nerve pain, neuropathy, and fatigue. This is why research is critical to sarcoidosis patients - it can lead to more treatment options that we so desperately need.

FSR is the leading nonprofit dedicated to finding a cure for this disease and improving care and treatments. Here are just a few ways they are making an impact:

• Invested $5 million for sarcoidosis research, with $1.5 million invested in 2019 alone.
• Accelerating research through fellowships, and small and large grants.
• Supporting and educating patients through wellness programs, webinars, and townhalls.
• Advocating for grants through NIH and pharma partners and pushing for better access to care and treatment options.
• Harnessing the power of sarcoidosis patients by training and supporting Patient Advocates, Patient Navigators, and Peer Mentors.

Partnering with FSR, I am on the front line of making a difference. I see the amazing work they are doing first-hand. Here’s a look at my recent efforts:
• Started my fifth year as a Patient Advocate (see photo above of me with other advocate friends).
• Taking on the role of a Patient Navigator; this is a new position created by FSR, where they match Patient Navigators with newly diagnosed patients to help them as they move through their sarcoidosis journeys.
• Member of the FSR Patient Advisory Committee and Research Subcommittee.
• Represented the patient’s voice in a two-year project to develop a core outcome set for pulmonary sarcoidosis research.

I am energized by the work I’m doing with FSR and supported by the community they have created. I am so grateful to have them as an amazing resource. They empower me with knowledge from the top doctors in the field and push on all fronts for better treatment options and a cure.

Thank you for supporting FSR and me, as we fight to make a difference.

Much love,
Heidi