Impact Report 2022
/ a Message from our founder
Oded Grinstein
Earlier this week, a parent wrote:
"Thank you for your efforts to arrange this amazing expert team to talk with us in order to shed some light and help us to decide about our next step in our son's treatment. It means a lot to us knowing there are good and kind people on our side who have our back. it gives us strength to keep fighting and hope”.
Notes like this keep all of us at MyChild’sCancer working hard to help even more families face the challenge of a lifetime. A child with a life-threatening diagnosis is every parent’s nightmare. We consider it a privilege to be able to help them in this way and want to thank YOU for your part in helping make it possible.
As a reminder, MCC’s main program, which defines us and makes us unique, is our personalized research identifying the best treatment options worldwide for kids with cancer. We achieve this by forming ad-hoc committees of international subject matter experts who cover any and every aspect of pediatric cancer. Whenever we are approached by a family of a child or young adult who isn’t responding well to treatment or with a complicated medical situation, our experts will provide a second opinion and share it on a video call with the parents and local oncologist to review possible treatment options. Our services are given free of charge to the families we help, and as always, we focus on finding treatment options that do not require international travel.
2022 was packed with activities, both old and new:
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Our Advisory Committee on Brain Tumors, which consists of a team of world experts, provided 31 consultations and second opinions. Those parents facing the most challenging time in their lives heard, “Your child is receiving the right treatment” or “You may want to consider doing X or implementing Y”
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We launched two new Advisory Committees to cover more types of cancers: solid tumors and neuroblastoma.
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We have significantly expanded the number of pediatric oncologists in Israel who refer complicated cases to MyChild’sCancer to be reviewed by our expert committees.
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We helped raise the level of pediatric cancer care in Israel by “importing” knowledge and expertise and creating professional networking opportunities with world experts.
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An internal reorganization is allowing us to meet the increased needs for our services and to support the growing number of services we offer our families. This reorganization will allow others to join our team - family coordinators, operations personnel, and additional board members - MyChild’sCancer is growing!
While the number of families we supported grew by 20%, our team and budget struggled to meet the demand for our services. We are working hard in 2023 to change that reality and support our growth.
Our goal in 2023 is to strengthen our two new advisory committees for patients with solid tumors and neuroblastoma. These world-renowned expert “dream teams” will advise and support patients with second opinions and treatment navigation.
We also plan to expand our educational programming to enrich and strengthen oncologists in Israel. In June, we will host a seminar in Israel for pediatric oncologists with two of the world's leading experts on pediatric brain tumors.
Additionally, we plan to launch a new program focused on long-term follow-up care for our families whose children’s cancers are in remission.
Oded
Save lives and improve quality of life by finding the best treatment for children with cancer.
/our mission
/ Mcc's Team
Oded Grinstein
Founder and Executive Director
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Natalie Refuah
Chairwoman
Varda Shoham
General Manager, MyChild'sCancer Israel
Avital Gaziel, Ph.D.
Board Member and Head of Medical Research
Michael Kasdan
Board Member and Development Chair
Toby Bressler, Ph.D.
Board Member
Robert Winkler,
Ph.D.
Board Member
Dorit Natan
Board of Advisor, MyChild'sCancer Israel
Daniel Treitel
Audit committee, MyChild'sCancer Israel
Shay Amar
Audit committee, MyChild'sCancer Israel
Liron Friedman
Programs Director
Ossi Ziv
Head of Brain Tumors & Neuroblastoma Committees
Michal Golomb
Head of Wikicancer initiative
INBAL TERER
Development Officer
Hila Beeri Uliel
Social Media & PR
Yifat Yaron
Family Coordinator
Nitsa Vardy
Family Coordinator
Polina Weitzenfeld
Ph.D.
Chief Cancer Researcher
Hila Barak, Ph.D.
Medical Research Advisor
Ronit reitshtein
Graphic Designer
/ How many families we helped in 2022
In 2022, MCC helped 87 families – a 20% increase in volume:
31
Kids and young adults with brain tumors (almost double from 2021)
56
Children with other types of cancers
45
Families have received second opinions that either altered or confirmed their treatment thanks to our involvement.
04
Families had to uproot and travel internationally for treatment.
14
Families consulted with our other committees.
/ MCC's pillars of service
Personalized Treatment Research
MyChild’sCancer’s team of cancer experts and researchers provides situational, personalized treatment research to connect families with the right course of treatment for their child. MyChild’sCancer empowers families to be proactive about the treatment course for their child’s cancer, significantly improving their child’s chances of survival.
MyChild’sCancer formed international committees of experts worldwide to cover every aspect of a specific type of pediatric cancer (i.e., Brain Tumor Committee, Solid Tumor Committee, Neuroblastoma Committee, etc). These experts offer families and local doctors second opinions, sharing the most up-to-date treatment options and best practices.
“Only three months after the consultation with Dr. Bouffet from MyChild'sCancer's Advisory Committee on Brain Tumors and thanks to the treatment option he suggested, for the first time since the cancer was discovered in my daughter Taila, at the age of 5 months, the tumor is significantly shrunk, and her oncologist was able to stop its growth! We delayed Talia's 1st birthday celebrations until we received the test results, and now we have many more reasons to celebrate!”
- Ben, Talia's Dad
LOCAL SUPPORT
MyChild’sCancer provides critical support services like relocation assistance and community support to families moving to the US for treatment. Family Coordinators work closely with families to address multiple needs: housing, transportation, new schools, and navigating a new, different culture.
Our work enables families fighting childhood cancer to feel supported so they can focus on the needs of their children.
“The fact that we had somebody to reach out to when we were in NJ, was so important and made all the difference for us.”
- Shalev family
WikiCancer
WikiCancer is the largest database of up-to-date medical knowledge and individual parent testimonials, providing parents and caregivers access to potentially life-saving information that cannot be easily gleaned from doctors or online search. WikiCancer empowers parents by giving them access to cutting-edge information and research. This allows them to better advocate for their children, make informed decisions, and be part of the conversation, which can lead to better outcomes for their children fighting cancer.
“Upon receiving the harsh diagnosis, parents tend to feel that there’s more relevant information out there, but they have no way of accessing it. This is a very difficult feeling. In such cases, it’s good to know that MyChild’sCancer is there to help you, every step of the way.”
- Tal, Ziv’s father
/ MyChild’sCancer world-experts advisory committees
Since 2021, we have formed three international committees of subject matter experts and leading pediatric oncologists from around the world to cover every aspect of a specific type of pediatric cancer (i.e., Brain Tumor Committee, Solid Tumor Committee, Neuroblastoma Committee). After reviewing each case thoroughly and providing their second opinion, these experts join an online conference with the child's parents and local doctors to discuss treatment options and best practices.
During these online conferences, unpublished data is shared, new connections to experts are made, and the most current research is shared with local medical practitioners.
Our recent survey shows that, in the past year, 100% of cases brought to our committees, mostly rare and complicated or 'hopeless' situations, were positively influenced by the treatment options proposed by the committees’ experts. This means every time we brought a case to the committee, the treatment was modified according to the recommendation made by it, or at least everyone agreed the current course of treatment was the best one.
“Upon contacting MyChild'sCancer, we were finally able to feel that we weren’t alone, that someone was on our side. The expert from the MyChild'sCancer Advisory Committee, with whom we consulted, has been in constant contact with us. We share test results with him, and he has expressed just how important it is to him to follow up. His expressed humanity and desire to help have exceeded our expectations.”
- Yonatan, father of a 9-year-old girl
/ 2022 Achievements
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We established two new advisory expert committees, in neuroblastoma and sarcoma, with the best doctors in the world in these fields. These committees join the advisory committee of experts on brain tumors, which we established in 2021.
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We have added one of the world's leading diagnostic imaging interpreters to the Brain Tumors Advisory Committee.
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49 families received a second opinion consultation from our advisory committees, which included a one-hour meeting with a world-renowned expert. These consultations often change the course of treatment of the child.
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We strengthened ties and cooperation between pediatric hemato-oncology doctors in medical centers across Israel. We facilitated brainstorming sessions to share information about clinical studies, drugs, and finding unique solutions for patients.
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We helped introduce new medicines into the Israeli healthcare basket
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We presented new clinical studies that were not known to the oncology community in Israel
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We expanded the team of experts available to MyChild’sCancer in the following hospitals across the US:
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Cincinnati Children’s Hospital - Ohio
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MD Andersen Cancer Center - Texas
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Cleveland Clinic - Ohio
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SickKids - Toronto
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Children’s Hospital of Philadelphia (CHOP)
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Memorial Sloan Kettering - NYC
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Weill Cornell Medical Center- NYC
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Montefiore Medical Center - NYC
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Seattle Children’s Hospital - Washington
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/ MCC Global Impact / Tikkun Olam
A family member of an 18 months old baby from Brazil reached out to us. At only eight months old, the baby was diagnosed with two types of leukemia. Her treatments weren’t working, and her doctors were unsure what to do next. Her physical condition was deteriorating rapidly.
When her family contacted us for help, We moved quickly to assemble a team with a Brazilian interpreter and a Brazilian nurse in the US, who translated the medical documents.
We started our search for the leading oncologists in Sao Paulo. At the same time, we worked to identify relevant
experts in the US. Our goal was to reach out to several experts to confirm the diagnosis and have at least two treatment suggestions within a week.
Dr. Robert Winkler, a board member of MyChild’sCancer, contacted a Brazilian hematology expert in the US. This enabled us to initiate email correspondence between experts in Brazil and the US. These experts put together a specific medical recommendation for the treatment that ultimately saved the baby's life.
/ Survey of families
As part of our continuing efforts to improve our services, we surveyed parents and patients we helped in 2022.
Survey highlights
Demographics of our Beneficiaries:
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Age of patients we support: 6 months to 32 years old.
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MCC provides global support for families: Israel, the United States New Jersey, New York, Ohio, Texas, and San Francisco), Denmark, Thailand, Singapore, Switzerland, Brazil, and Argentina:
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Other family referrals account for 50% of our new families.
/ MCC's families received support in:
The access to expert doctors and the knowledge you bring is very helpful.
(Dinari Family)
You taught us not to be afraid to ask questions and not to take the doctors' recommendations for granted
(Assi Family)
You have done a lot for us. Thanks’
(Cohen Family)
/ Impact Stories
/ We offer optional treatment
Mika, a 12 years old girl from Israel, was diagnosed with osteosarcoma two years ago. Her family approached us in May 2022. We translated her medical documents into English and convened a consultation with our advisory committee. The team discussed various treatment options in the US should her condition deteriorate or the treatment options in Israel be exhausted.
In November 2022, Mika’s condition took a downward turn. We convened another meeting with our Advisory Committee and Mika’s doctors in Israel. As a result, the family decided to apply for a clinical trial taking place in the US in cooperation with the Kanfei Ruach organization. We are currently helping Mika’s parents through the application process for the medical trial.
T, a 10-year-old girl, was diagnosed with a very rare form of pediatric cancer when she was just eight years old. She underwent complex surgery to remove her pancreas. But two years later, metastases were found in her stomach and liver, resulting in even more complicated surgery.
Her family approached us, and we prepared an updated medical file, which we translated into English. We also connected them with Dr. Geller, a world-renowned specialist at Cincinnati Children’s Hospital in Ohio.
Thanks to our close ties with Cincinnati Children’s Hospital, Dr. Geller’s team reexamined the pathological findings free of charge, despite it being a long and expensive process. Once we received the new results, we arranged a video meeting with the family, the attending medical team in Israel, and Dr. Geller’s team. During the meeting, the experts recommended an innovative, groundbreaking drug treatment that is currently only available in the US. We are now working with the drug manufacturer to make the medication available to the family in Israel.
/ We offer a better chance
/ Goals for 2023
General
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Support more families.
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Increase awareness of MyChild’sCancer's services.
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Increasing fundraising to support our work.
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Expand and deepen the expertise of our board.
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Launch new programs. (long-term treatments).
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Expand education offerings.
Personalized Research
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Establish additional expert committees for different types of cancer.
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Share knowledge about long-term treatments during remission.
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Continue to information on clinical trials that focus on childhood cancer in Israel.
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Facilitate collaboration with social workers in hospitals and oncology departments in Israel.
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Continue to work on introducing new drugs that address rare pediatric cancers into the Israeli health basket.
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Strengthen relationships between hospitals and doctors in Israel and the USA.
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Bring unique knowledge and enrichment to oncologists in Israel by introducing them to the best brain tumors and neuroblastoma experts from abroad.
local support
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Offer lectures on topics relevant to our families.
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Continue to offer families who come to the United States for treatment whatever support they might need.
wikicancer
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Secure funding sources to support WikiCancer’s expansion.
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Add information and knowledge to WikiCancer from our collaborations with other parents of children dealing with cancer (treatment methods, relevant clinical trials, dealing with side effects).
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Include new, professionally produced parent testimonials.
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Interview new families in person.
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Add sections on additional types of cancers.