The EHE Foundation

Leah Heinrich Participates on Scientific Peer Review Panel

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For Immediate Press Release: 

SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ RARE CANCERS RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE

The Congressionally Directed Medical Research Programs’ (CDMRP), Rare Cancers Research Program (RCRP) consumer advocate Leah Heinrich recently participated in the evaluation of research applications submitted to the RCRP. Leahwas nominated for participation in the program by The EHE Foundation, Hobart, WI.  As a consumer reviewer, she was a full voting member, (along with prominent scientists) at meetings to help determine how the $7.5 million appropriated by Congress for Fiscal Year 2020 will be spent on RCRP research. 

Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Leahsaid that, “It is an honor to be apart of such an important program and represent the rare cancer patient voice. It’s exciting and humbling to see brilliant minds at work developing innovative ideas that could one day make a huge difference in the lives of rare cancer patients”.

The U.S. Congress established the Rare Cancers Research Program in the FY20 Department of Defense appropriation. With this new program, consumer advocates and scientists work together in this unique partnership to evaluate the scientific merit of research applications. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs.  Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted.  We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.

Scientists applying propose to greatly improve outcomes for people with rare cancers through discovery, community building, and expansion of knowledge across the cancer landscape. The RCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking research while encouraging out-of-the-box thinking.

More information about the CDMRP’s RCRP is available at the website: https://cdmrp.army.mil/rcrp/default .

Media Contact:
Kate Poindexter
Public Affairs Specialist
Ripple Effect
Supporting the Congressionally Directed Medical Research Programs,
USAMRDC
301-619-7783
Kathleen.poindexter.ctr@mail.mil

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Rosemary Kalair

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Rosemary or “Rose” was a compassionate, loving, caring person by nature. She was a nurse for 42 years, and retired in June, 2019. She began her career as a float nurse in the hospital, opened and managed an urgent care, amongst many other departments. She concluded her career as a Cardiac Rehab Nurse. Nursing and caring for people was the passion that drove her.

To get away from the stress that goes with the daily grind, she would take frequent trips to Las Vegas, Nevada to visit her children, Nicholas and Stacy. Her favorite and most joyful trips and were the more than 30 cruises she went on. Loving to be in the sun, relaxed atmosphere and island music made her feel the best.She was extremely active in St Isadore parish from being a Eucharistic Minister to making food for families in need; there was nothing she would say “no” to if it gave her a chance to share her faith.

In 2012, Rosemary was diagnosed with EHE of the liver. She didn’t let it control her life; she lived life to its fullest. Her biggest issue with having EHE was how inconsistent doctors were with their opinions as to what she would do or how serious it was. That deeply frustrated her. There is so much unknown about EHE. She was persistent with following up with different doctors with different expertise.The “unknown” was the most challenging part of EHE for Rosemary. Was it going to grow? Was it going to spread? What were possible treatments? She passed away in February of 2020 from a blood clot in the portal vein of her liver.

The EHE foundation was important to her because she found a community to lean on. She was an avid supporter and friend to the foundation. Upon her passing, her liver and tissue were donated for EHE research. As mentioned earlier, she was a giver by nature and if her donation can help someone else, her mission would be complete.You may also send a check to The EHE Foundation, 1561 Hopi Ct, Hobart, WI 54313

Amanda Roach

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I am Amanda Roach from Gastonia, NC. I’ve been married to Philip for 12 years and my two children are Henry (age 7) and Lucy (age 5). I love spending time with my family, which also includes our two fur babies Gemma (a bulldog) and Dino (a husky/shepherd) mix. I’m a high school science teacher when my cancer allows it. I’m passionate about science and love being a teacher.

I first had symptoms in June of this year and was officially diagnosed on July 20th of this year. Initially hearing the word “cancer” was hard, but my doctor was very comforting in assuring me that EHE is typically very stable. That turned out to be false in my case. My EHE is very aggressive. My initial tumor went from 6cm to encompassing the entire left lobe of my liver in one month. I did have that lobe removed, but spots showed up in the remaining portion of my liver about a month after surgery. Since the end of September, I went from two medium sized spots to having too many to count. I did undergo chemotherapy, but it did not work. Now I’m waiting on a new liver. My diagnosis has truly been life changing for everyone. Most days I can barely get out of bed. I can’t do things with my two young children or my husband. I am currently waiting on a living donor because that is my only hope right now. My MELD (model for End-Stage Liver Disease) score is only a 25, which means there not much hope for a deceased donor at this time.

Research is so important for all EHE patients because there is no official treatment. Doctors have to make guesses and hope they are correct while their patients’ lives hang in the balance. The EHE Foundation funds research, connects patients with resources, and connects us to one another for support. I wish people knew that everyone’s EHE is different. EHE can show up anywhere at any time and change its behavior very quickly.You may also send a check to The EHE Foundation, 1561 Hopi Ct, Hobart, WI 54313

Amit Tandon

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My name is Amit Tandon. I live in Katy, TX (suburb of Houston) with my rockstar wife (Rupali), daughter (Vrinda) who is 15, and son (Vansh) who is 16. We are big foodies and love all sorts of cuisines. I love spending time outdoors. I also enjoy running (although my knees don’t always play ball). My EHE was diagnosed in my liver in the fall of 2007 at Yale, New Haven, CT.

My Christmas gift in 2007 was a liver transplant, which happened on Dec 22, 2007. I celebrate it as my second birthday. I also received chemotherapy after the transplant (Doxyrubicin). EHE recurred in my transplanted liver in 2012. I was treated at Dana Farber Cancer Center in Boston, and underwent 9 months of Thalomid therapy, which was successful in stopping the growth both in terms of numbers of tumors and the size. This time also, it was limited to my liver only. Since then, I have been stable and have been on a wait & watch approach. I am currently being followed by Dr. Ravi at MDA in Houston.

I wish more cancer specialists knew about EHE. Even in countries with well-developed medical infrastructure, very few know about EHE. It is extremely painful to see our global EHE patients/families suffer due to lack of knowledge on how to treat such a rare cancer.Due to its rarity, no major cancer institute or foundation is spending significant enterprise dollars on researching EHE. While this approach is understandable, it leaves patients and their families feel like guinea pigs when it comes to treatment. Dedicated research is the only way to find solutions for this rare cancer.

The EHE Foundation, its officers, medical panel, and members are often the only source of hope for EHE patients and their families. It has taken significant steps in compiling the single largest EHE patient directory, which includes a lot of excellent information and provides answers to several patients and families. The foundation has funded several programs dedicated to EHE research and has created awareness of this otherwise extremely rare cancer. It is funding dedicated EHE research projects in several extremely large cancer institutes, like MSKCC and Cleveland Clinic, allowing experts to learn more about it.

In my opinion, mind plays a very huge role in dealing with any major illness like EHE. It is extremely hard while desperately searching for solutions. I believe staying positive is the single largest factor I could control. Everything else was being managed by my care providers and family. When I was originally diagnosed, my Hepatologist at Yale Dr. Tamar Taddei told me, “90% of the treatment happens in your mind, modern medicine can only provide the remaining 10%.” We need 100% and then some to fight EHE. Spirituality and yoga has played a huge role in my life, and I encourage everyone to find their spiritual journey and I assure you that it’ll better prepare you to deal with not just EHE but any eventuality life throws at you. I follow @Sadhguru (ishafoundation.org).

Sandy Meaders

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I am Sandy Meaders from Laurel, Mississippi. My wife Barbara and I are retired from the general rental, hardware, paint business. We have four grown children and five grandchildren. We are also rescuees of a dog named Apple.

During the pre-op for knee replacement, a tumor was detected in my chest. It was removed via a thoracotomy in December of 2018 and I was diagnosed with EHE in January of 2019. Because the tumor was encasing my vena cava, ten percent of it could not be removed. Since then, I have had regular scans and tests done at MD Anderson. Dr. Ravi has recommended a “watch and see” approach and I have not had any treatments to date. Like most others, I had never heard of EHE. This began an educational journey.

The EHE Foundation and its supportive community have been invaluable to my learning curve. EHE is challenging because it is extremely rare and therefore there is lack of data. This underscores the value of The EHE Foundation. The foundation funds EHE research, which is the best chance of finding a cure, providing effective treatments and giving hope to those who have been diagnosed. Again, The EHE Foundation has been a wonderful source of information. I was given an added level of hope when I found out about this special group. It has given me a sense of empowerment, inclusion and strength that I really needed.