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PAL Program

 
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The EHE Foundation Patient Advocate Leader (PAL) Program

PAL Program is a new volunteer opportunity for our US-based EHE patients or caregivers. We are looking for a diverse, passionate and highly motivated group of volunteers who want to support the Foundation's initiatives, learn more about EHE and advocate on behalf of anyone affected by EHE.

PAL participants will gain valuable knowledge on EHE science and research, advocacy, Foundation programs and the overall sarcoma cancer landscape.  If you are interested in joining our PAL team, please contact Medha at mdeorassutliff@fightehe.org

2020 PAL Program Participants

Amy Baghdadi

Amy Baghdadi

Amy Baghdadi is an attorney with 15 years’ experience in commercial litigation and risk management.  She received her Bachelor of Arts in English from the University of California at Santa Barbara in 1994 and her Juris Doctorate from the University of California Hastings College of the Law in San Francisco in 1997.  In 2010, Amy was diagnosed with EHE in her liver and lungs, and in 2011 she had a liver transplant.  The following year, Amy decided to step away from the law to focus on her family, her health and volunteer work.  Her volunteer work has included acting as a Lead Ambassador for the Donor Network West, an organ procurement organization in Northern California, working with the National Charity League, Compass Family Services, and serving in a variety of roles with her children’s school including in advancement and fund raising.  Amy has served on the Board of Trustees for the French American International School and International High School since 2018 and is currently the Chair of the Board.  Amy lives in San Francisco, California with her husband and two children.

Molly Gibson

Molly Gibson

Molly Gibson was diagnosed with EHE in March of 2018.  She needed a CT scan to determine if lymph nodes were being affected by a new diagnosis of another rare cancer- Waldenstrom’s Macroglobulinemia (for of non-Hodgkin’s Lymphoma). The scan showed lesions on her liver which were biopsied and found as EHE. That all happened within a few weeks! Quite an adventure! Molly has been in elementary education for over 25 years and is also a fitness instructor and nutritional coach. She has 2 grown children and a new baby grandson.

Leah Heinrich

Leah Heinrich

Leah was diagnosed in October 2019 with EHE in her lungs, and liver involvement confirmed in June 2020.  Being newly diagnosed and not having local doctors who were knowledgeable about this rare sarcoma, Leah found the EHE Foundation through her own research.  Leah credits The EHE Foundation for the support and direction she received in finding a doctor at Memorial Sloan Kettering in NYC.  While being fortunate to not have active growth and be on a "watch and wait" approach, Leah is excited to be a part of the PAL Program and help others who are also starting their journey with EHE.  Professionally, Leah works in the development office at a small liberal arts college in Easton, PA and brings with her 14 years of fundraising knowledge.  In her spare time, Leah enjoys spending time with her husband and two kids and planning trips to the beach or Walt Disney World.

Sandy Meaders

Sandy Meaders

Sandy Meaders lives in Laurel, MS with his wife Barbara. Both have been retired for 10 years from owning and managing a general rental, hardware and paint business for almost 40 years. Sandy is a 1972 graduate of the University of Southern Mississippi with a degree in Political Science and Secondary Education. Other involvements have been with the American Rental Association, Chairman of the ARA Insurance Board, House of Representatives of the Mississippi Legislature, Sertoma International service club, and various state and local boards and committees. Sandy was diagnosed with EHE in January of 2019. Ninety percent of a large tumor that was encasing his vena cava was removed through a thoracotomy. Currently he in under the care of Dr. Vinod Ravi at MD Anderson and is stable on a “wait and see” approach.

Jennifer Mulligan

Jennifer Mulligan

Jennifer lives in Westchester County NY, has been married for almost 18 years and has two sons James (14) and Joseph (10).  She has over 20 years’ experience working as a Licensed Clinical Social Worker. Currently she leads a team of clinical nurses and social workers within a health insurance plan that focuses on members who are at the most risk for complex medical and behavioral health needs in the state of NY. Jennifer holds an undergraduate degree in Psychology and Human Services and a master’s degree in Social Work from Fordham University. Her passion is advocacy work and working with children and adults of all backgrounds and abilities. In her free time she considers herself a great Uber driver to her kids baseball and basketball games. She also loves NY sports, travel, good food and adventure.

In October 2019, Jennifer Mulligan’s son Joseph was diagnosed with EHE. She describes Joe as an amazing, smart, athletic little boy whose strength battling a rare cancer amazes her beyond his years. His compassion for others and ability to talk about his EHE is a testament to his abilities.

Since connecting with The EHE Foundation, Jennifer has been involved with fundraising for Giving Tuesday and the EHE Walk, writing articles on health and stress management during COVID and living with  cancer articles for various news media and the EHE Pledge Newsletter, and assisting with organizing the virtual library. She’s looking forward to being an advocate for those with EHE and their families and hopes to make our voices heard, treatment to be discovered and to never lose hope- JUST LIVE!

Keren Stern

Keren Stern

Keren lives in Las Vegas, Nevada. She was diagnosed with EHE on Feb 28, 2017. Thinking about having cancer, needing surgery, and what that meant was beyond scary. Keren’s EHE has no outward physical attributes, so people don't know she has it. For the most part, she wishes more doctors knew EHE existed or at least heard of it before patients go in for a consultation.

Living in Las Vegas, the biggest challenge for Keren is the lack of local medical facilities and the need to travel across the country for treatment.  Traveling is exhausting, expensive, and requires jumping through hoops with insurance and the out of network benefits. There is very little known about EHE which means there is no "gold standard" or proven to work protocol. We are all just sitting ducks and guinea pigs to every treatment modality.

Keren feels she owes her life to The EHE Foundation because they gave her answers doctors couldn't. She was able to find doctors through The EHE Foundation who have seen other patients with EHE.  These doctors had knowledge of this cancer and its behavior. This was priceless in a situation where she would otherwise have ended up down the wrong treatment path. The EHE Foundation is a support system like no other, filled with caring people all personally invested in each member's well-being. A win for one is a win for all!