Join the EXHALE 4 SARCOIDOSIS FOUNDATION DMV Community
Connect with like-minded individuals living with Sarcoidosis
“Living with sarcoidosis. Leading with purpose.” “Still breathless, but never voiceless.” “Amplifying voices, advancing sarcoidosis awareness.”
Marsha Henderson
CEO & Founder
I am a sarcoidosis warrior, FSR Patient Advocate, Women of Color Committee member, and Global Sarcoidosis Clinic Alliance Community Group Leader for MedStar Hospital in Washington, D.C.
Diagnosed with pulmonary sarcoidosis in 1995 and neurosarcoidosis in 2002, I’ve faced life-altering challenges while raising a family and building awareness about this often-misunderstood disease. Through my advocacy, I shine a light on the health disparities that disproportionately affect African American women and work to ensure our voices are represented in research, care, and treatment.
💜 Breathe Air 4 Me 💜
My Story
CEO & Founder
I am a sarcoidosis patient, an FSR Patient Advocate, an FSR Women of Color Committee member, and the FSR Global Sarcoidosis Clinic Alliance Community Group Leader for MedStar Hospital in Washington, D.C.
About Sarcoidosis
Sarcoidosis is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, sarcoidosis can interfere with an organ’s structure and function. If left unchecked, chronic inflammation may lead to fibrosis, which is permanent scarring of organ tissue.
This disorder affects the lungs in approximately 90% of cases, but it can impact almost any organ in the body. Despite advances in research, sarcoidosis remains difficult to diagnose, with limited treatment options and no known cure.
My Journey
I was officially diagnosed with pulmonary sarcoidosis in 1995, followed by neurosarcoidosis in 2002 while working as an Emergency Medical Technician for D.C. Fire & EMS Services. Since then, my life has been shaped by incredible challenges, changes, and disappointments—impacting not only me, but also my children, family, friends, and even people I have yet to meet.
In the beginning, I tried to act “normal,” but it was hard to explain a disease that attacked my lungs and mimicked other illnesses. It was even more difficult to explain my symptoms to doctors unfamiliar with sarcoidosis.
Some of the symptoms I have faced include:
- Coughing so severely that it tore the retina in my eyes.
- Losing my balance and walking sideways because of equilibrium issues.
- Sudden, unexplained fatigue that raises stress levels.
- Difficulty breathing if exposed to air conditioning or heat blowing directly at me, as it constricts my throat and triggers shortness of breath.
I also developed debilitating neuropathy as a side effect of chemotherapy and methotrexate. My emergency room visits became constant—over 50 in just three months.
Health Inequities
Current medications for sarcoidosis were developed without adequate representation of Black Americans in clinical trials, despite Black patients being 2.5 times more likely to develop sarcoidosis than White patients.
African American women, in particular, bear the greatest burden—experiencing more severe symptoms, more organ involvement, and higher hospitalization and mortality rates. According to the FDA, only 7% of clinical trial participants are Black. This disparity puts my quality of life, and the lives of many others, at greater risk.
Statistics show:
- Black Americans are 12 times more likely to die from sarcoidosis at a younger age compared to White Americans.
- They also receive higher cumulative doses of steroids, which can worsen mental health, fatigue, and stress.
Finding Support
After years of searching for answers, I connected with the Foundation for Sarcoidosis Research (FSR)—the leading international patient advocacy organization dedicated to finding a cure and better treatments for sarcoidosis warriors like myself. FSR gave me a sense of relief, a breath of fresh air, and the reassurance that I was not alone.
I am deeply grateful to FSR for advancing research and amplifying the voices of those impacted by sarcoidosis. My hope is that, through continued awareness, advocacy, and scientific progress, one day there will be a cure.
💜 Breathe Air 4 Me 💜
About EXHALE 4 SARCOIDOSIS FOUNDATION DMV
Our Vision
We envision a world where everyone has equal opportunities to thrive and succeed. At EXHALE 4 SARCOIDOSIS FOUNDATION DMV, we work towards creating a more just and equitable society by advocating for policies that promote social justice and equality.
2023 Congressional Briefing for Sarcoidosis Rayburn House Office Building Washington, D.C.
A congressional briefing related to sarcoidosis would typically involve presenting information and insights about sarcoidosis to members of Congress or their staff. During the briefing, experts, advocates, or representatives from relevant organizations may provide key information about the prevalence, impact, and challenges associated with sarcoidosis. They may discuss the latest research findings, advancements in treatment options, and the needs of individuals living with sarcoidosis.
The goal of the briefing is to raise awareness among policymakers, seek support for increased research funding, and advocate for policies that can improve the lives of those affected by sarcoidosis. It's an opportunity to educate lawmakers about the disease and its impact on individuals and communities, with the aim of fostering a better understanding and support for initiatives that address sarcoidosis-related issues.
Community Partnership
At the Exhale 4 Sarcoidosis Foundation DMV, we are dedicated to making a positive impact on our community through various programs. One of our most exciting initiatives is the Adopt-A-Block Community Clean Up. Join us in creating a cleaner, healthier, and more vibrant neighborhood!
Our Adopt-A-Block initiative focuses on involving voluntee
At the Exhale 4 Sarcoidosis Foundation DMV, we are dedicated to making a positive impact on our community through various programs. One of our most exciting initiatives is the Adopt-A-Block Community Clean Up. Join us in creating a cleaner, healthier, and more vibrant neighborhood!
Our Adopt-A-Block initiative focuses on involving volunteers who are passionate about community improvement. By adopting a specific block, together we can make a significant difference in the cleanliness and appearance of our neighborhood.
How it works: Volunteers commit to regular clean-up activities to maintain the block they adopt. This includes removing litter, sprucing up green spaces, and contributing to a safer and more welcoming environment.
Benefits: By participating in the Adopt-A-Block program, you actively contribute to the well-being of our community. Additionally, it provides an opportunity for team-building, fostering a sense of pride among participants, and making new connections with like-minded individuals.
How to Get Involved:
Sign up as a volunteer: Visit our website and fill out the volunteer registration form to express your interest in joining the Adopt-A-Block initiative. We will provide you with all the necessary information to get started.
Sponsorship opportunities: If you are a local business or organization looking to support community programs, consider sponsoring the Adopt-A-Block initiative. Contact us to discuss sponsorship benefits and opportunities.
Stay updated: Check our website regularly for upcoming events related to the Adopt-A-Block initiative and other community programs. We also share news about our community impact and success stories from our volunteers.
Conclusion: By participating in the Adopt-A-Block Community Clean Up Initiative and other programs offered by the Exhale 4 Sarcoidosis Foundation DMV, you can actively contribute to the betterment of our community. Join us today and be a part of creating a cleaner, healthier, and more vibrant neighborhood!
Annual Sarcoidosis Awareness Walk
Save the Date: Join us for the highly anticipated Exhale 4 Sarcoidosis Foundation DMV Annual Sarcoidosis Awareness Walk, scheduled for April 2024 (specific date to be announced).
This event brings the community together to raise awareness about sarcoidosis, a complex inflammatory disease. Together, we walk in support of those affected, celebrate their strength, and raise funds for research, education, and support services.
Event details: The Annual Sarcoidosis Awareness Walk will start at [starting point] and follow a designated route through the vibrant streets of our community. Participants of all ages and fitness levels are welcome to join.
Registration and fundraising: Prior to the event, registration will be available on our website. We encourage participants to create personalized fundraising pages and share them with friends, family, and colleagues to support the cause.
Volunteer opportunities: We rely on passionate volunteers to help make the Sarcoidosis Awareness Walk a success. If you would like to contribute your time and skills, contact us to learn about available volunteer opportunities.
Conclusion: Mark your calendars for the Exhale 4 Sarcoidosis Foundation DMV Annual Sarcoidosis Awareness Walk in April 2024 (specific date to be announced). Join us as we come together as a community to raise awareness about sarcoidosis, support those affected by the disease, and work towards a future with improved research and resources.
Our Activities
We offer a variety of activities and events for our members, including volunteer opportunities, social gatherings, and educational workshops. Our goal is to provide something for everyone and create a sense of belonging for all.
Spreading awareness about sarcoidosis is crucial in breaking barriers and improving understanding within the c
We offer a variety of activities and events for our members, including volunteer opportunities, social gatherings, and educational workshops. Our goal is to provide something for everyone and create a sense of belonging for all.
Spreading awareness about sarcoidosis is crucial in breaking barriers and improving understanding within the community. Lack of knowledge, stigma, and limited resources are common barriers that need to be overcome. By organizing educational workshops and awareness walks, we can provide information about sarcoidosis and its symptoms, leading to early detection and proper support. Breaking the stigma surrounding sarcoidosis is important to ensure individuals receive timely medical help and accommodation without judgment. Community support groups play a vital role in providing a safe space for individuals affected by sarcoidosis. These groups foster understanding, connection, and access to resources, ultimately enhancing overall well-being.
Help Our Cause
Welcome to Exhale 4 Sarcoidosis Foundation DMV! We are committed to the important work of Raising awareness: Promoting awareness and understanding of Sarcoidosis among the general public, healthcare professionals, and policymakers to reduce misconceptions and stigma. However, to continue making a difference, we need your support. With your contribution, no matter the amount, we can make significant strides in advancing . By donating to our cause it will help with providing resources, educational materials, and support programs for individuals affected by Sarcoidosis, including patients, caregivers, and their families. No donation is too small; every dollar helps fuel our efforts in creating a better world. Together, we can make a profound difference and achieve lasting change. Please consider making a donation today by selecting an amount that is meaningful to you. Your contribution will be used efficiently and transparently to maximize our impact. Thank you for your support and belief in our mission. Together, we can make a positive impact and bring about meaningful change.
Marsha Henderson, CEO
Exhale 4 Sarcoidosis Foundation DMV
