Funding = Research = More Treatment options = Better quality of life. Funding = Programs = Empowerment + Community + Knowledge = Better quality of life.
Thank you for being a part of these two critical equations.
Thanks to your generosity over the years, we are making real progress. FSR has made huge strides toward raising awareness, recruiting for clinical trials that are leading to new therapies, and offering programs that educate and help patients now. By investing in these immediate and long-term strategies, they are making a real difference that is felt by patients and their families.
April is Sarcoidosis Awareness month, and in honor of this very important month, I graciously reach out for your support. Please consider donating to FSR and their great work. Any amount has an impact.
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 2013, and since then the disease has damaged 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. As a Board member, I am proud of the great strides we have made over the past year. Here are a few highlights:
• In 2021, aTyr Pharma completed the first successful clinical trial in the development of a treatment for sarcoidosis specifically. FSR played a pivotal role in the clinical trial development and patient recruitment. There are now an anticipated 7 sarcoidosis-specific clinical trials set to begin in 2022-2023. • FSR was selected as one of 20 organizations as the recipient of the 2022 Chan Zuckerberg Initiative Rare as One Cohort. FSR will receive $600,000 over three years. • FSR has been building stronger relationships with the NIH and FDA to increase research and drug development. This includes first-ever invitations to speak at FDA Rare Disease Day 2021, NIH Rare Disease Day 2022, and an upcoming FDA Patient Listening Session in April 2022. • FSR hosted the first-ever Clinical Engagement Conference to allow for clinician networking and best practice sharing with 77 clinician attendees and over 50 institutions represented.
Partnering with FSR, I am on the front line of making a difference. I see first-hand the amazing work they do. Here’s a look at my recent efforts:
• Member of the Board of Directors. • Volunteer as a Patient Navigator; partnering with patients to help them strategize a care plan, share best practices, and feel supported by someone who understands. • Participating in an upcoming FDA Listening Session to inform the FDA about the importance of making more drugs available to sarcoidosis patients.
I am energized by my work with FSR and I am so grateful to have them as a reliable 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.