The Cristian Rivera Foundation (CRF) just announced the winner of the Vision of Hope Award to be awarded to Linda Wachtel of the Children’s Brain Tumor Foundation and Jenna’s Rainbow Foundation at CRF’s largest fundraising event of the year, the 13thAnnual Cristian Rivera Foundation Celebrity Gala.
Linda Wachtel is a New York native who now lives in New Jersey as a couples and family therapist. She is also on the Board of Directors for both the Children’s Brain Tumor Foundation and Jenna’s Rainbow Foundation, where she connects with pediatric brain cancer patients and families, has spoken at medical conferences, coordinates fundraising events, and brings awareness to brain cancer patients and survivors.
Growing up, Linda’s parents always taught her not to look away from people who are in need. They instilled in her the desire to pursue a helping profession, like her career in social work where she has been able to do what she is most passionate about—helping people in need.
By profession, Linda became a social worker and now works as a couple and family therapist. She went to graduate school for social work and earned her MSW, establishing her career in social work. She got married, and her husband was finishing up his medical residency and fellowship training to become a physician. Their lives were just starting. Soon they had their first son, Tory, and everything was looking happy for the Wachtel’s.
When Tory was 18 months old, he suddenly became ill, and after a month of odd symptoms, he was diagnosed with a brain tumor. Before they knew it, their lives were turned upside down by this difficult and unexpected diagnosis.
In our interview, Linda Wachtel explained her thought process during that time: “When you pick yourself off the ground following that diagnosis, and you try to focus on how to keep moving forward, the first thing is that you’re figuring out how to save your child’s life. Brain tumors today have a range of outcomes, but at that time, we were told that our child would die. We were searching for care and were fortunate to land in the right hands.”
Linda explained that since her husband was a physician, he took the lead in networking and finding the right treatments and care for their son, Tory. “We accessed a variety of medical opinions and care,” Linda continued. “He had many surgeries and was on treatment from the time he was 19 months old to the time he was 8 ½ years old.”
At this time, back in 1987, there were no foundations or the internet to find support or information about these diagnoses. Linda recalled asking at the hospitals hoping to find support groups or talk to parents who were experiencing the same kind of life-changing situation, but everyone would tell Linda that the only people they could connect her with were parents of children who had lost in their fight against their brain tumor. Linda was shocked.
In 1988, a small group of parents and oncologists came together in New York City, creating the Children’s Brain Tumor Foundation (CBTF). They formed this foundation in order to raise funds for research specific to children. At this time, there was little information about brain tumors, and pediatric patients were being treated with the same medicine doctors used to treat adult cancer patients. Though Linda was not one of the original founders, she came right on the heels of the CBTF’s inception in 1991, joining the important movement of pediatric brain tumor awareness and research.
In 1991, Linda was introduced to this foundation through a family member and has been a supporting member of the foundation ever since.
Linda said, “I was so grateful to have a way to try to raise money for research because nothing can happen without research. It was a relief, and I was able to find ways to help. I knew innately that I needed a community of parents to connect to, to sort of live in this new life that I had, and to make sense of it. Some of us are still really connected today, 30-plus years later.”
Linda explained how her son is a brain cancer survivor and is now 36 years old. He has been healthy since he was 8 ½ years old. Although he has some challenges from his brain tumor and treatments, he is alive and has a full life. Tory graduated college and went to graduate school. After experiencing the lack of support pediatric brain cancer survivors had after treatment, Linda knew that she needed to do something.
“Over time, after putting one foot in front of the other, I came back to myself and started on this journey. I was working with families and raising money for research; I became involved with speaking with physicians passionately and speaking at medical conferences about what families experiencing this brain cancer diagnosis needed— and then what survivors needed.”
Linda explained that a lot of times after treatment, medical professionals will say great outcome and we’re done’ or ‘you’re good to go, watch and wait or all treated,’ but as a mother of a cancer survivor, she knew their journey with this diagnosis wasn’t over. There was still that feeling of ‘what do we do now,’ ‘how do we raise a child whom we don’t know if they are going to live or not,’ and ‘how do we make sense of all of this.’ She immediately became a mom on a mission.
In 2004, she officially became a board member of the Children’s Brain Tumor Foundation, fundraising and pioneering programs for survivors. With her experience as a social worker and a mom of a cancer survivor, she had a beautiful vision of how she could start programs to help not just those with pediatric brain cancer but also survivors. She realized this diagnosis was a life-long journey. Within the CBTF board of directors, Linda became the Chairperson for Patient Education and Support Programs and worked towards creating programs for survivors that are in place today.
Linda said, “Very quickly, I couldn’t look away. I needed to keep doing something.”
While Linda was volunteering with the Children’s Brain Tumor Foundation, she was connected with another family in their community with a child experiencing a similar diagnosis as Tory. When this little girl, named Jenna, unfortunately passed away from her brain cancer, her family received an outpouring of love and support. With this support, they saw the importance of creating a foundation to support families and children experiencing a pediatric brain tumor diagnosis. Soon after, Jenna’s Rainbow Foundation was formed to improve children’s and their family’s quality of life by alleviating any burdens these families were going through— whether emotionally, physically, or financially.
Learn more about Jenna’s Rainbow Foundation here.
Linda Wachtel was one of the original founding board members at this foundation’s inception in 1999 and is one of the only board members with a child who had a brain tumor. Through Jenna’s Rainbow Foundation, Linda has had the opportunity to speak with families, organize fundraisers, and help families alleviate their financial and physical burdens after their catastrophic diagnosis. They also give grants in order to develop innovative and needed programs to help families and other brain tumor foundations.
“It’s always been my hope that from the moment of diagnosis, there should be a continuum of care, taking care of the children, their siblings, their parents, and the range of emotional to practical needs of these families. Jenna’s Rainbow has worked closely with the Children’s Brain Tumor Foundation, and we’ve also given grants to families in collaboration with the Cristian Rivera Foundation.”
Linda explained that after another board member of Jenna’s Rainbow Foundation, Allison Teicher, went to a fundraising event hosted by the Cristian Rivera Foundation, she was able to connect with the founder, John “Gungie” Rivera. Linda was then able to connect with John, and their foundations have partnered together to give relief to families in their communities.
Linda said this of the founder of the Cristian Rivera Foundation, “We are both friends and colleagues in the brain tumor world. John and I are parents driven by the fuel that sometimes ignites parents who have seriously confronted the crisis of pediatric brain tumors and serious illness. John does incredible work with the Cristian Rivera Foundation, and his mission is surrounding DIPG. Together, we have helped many families.”
The Cristian Rivera Foundation (CRF) is a New Jersey-based 501(c)(3) not-for-profit organization founded by John “Gungie” Rivera in 2009 after the loss of his son Cristian to Diffuse Intrinsic Pontine Glioma or DIPG, a rare pediatric brain tumor. The Cristian Rivera Foundation is dedicated to funding research and trials which aims to find a cure for DIPG. This is the same foundation throwing its largest fundraising event of the year on November 16th where they will be honoring Linda for her commitment to the pediatric brain tumor community.
The 13th Annual Cristian Rivera Foundation Celebrity Gala is CRF’s largest event, where they collaborate with high-profile attendees to put on a night of red-carpet entrances, touching stories and testimonials from DIPG families, entertaining and inspirational performances, and items and experiences up for auction in order to support its mission of raising money for the research and treatments of DIPG. For more information about this event, visit the Cristian Rivera Foundation’s website here.
Linda is honored to be awarded the Vision of Hope Award at this year’s Celebrity Gala.
For a time after her son’s unexpected diagnosis, Linda paused her work as a social worker while she was raising and taking care of her children. Her family had so many challenges in their beginning years, so being able to be present and raise her kids, while having the flexibility to invest in and support the Children’s Brain Tumor Foundation and Jenna’s Rainbow Foundation was not only a huge blessing to her but also a necessity. Her experience raising a child with a brain tumor, connecting with so many families experiencing the horrible diagnosis she went through with her son, and also her devastating experience of losing her newborn son to a different genetic disorder prepared her for becoming a therapist and helping other people work through their heartaches in life.
“I knew I needed to make meaning of all these experiences that I’ve had,” Linda explained, “raising a child who had cancer, having an infant die of a genetic disorder, adopting our daughter following that, and having this whole experience with adoption. Then our youngest son Brett, I was able to have biologically due to advances in genetic testing. Keeping our marriage and family strong was a priority. I had to make sense of all these experiences that I’ve had. So, in my 50s, I pursued additional extensive training in couples and family therapy and now have a thriving private practice in Englewood, New Jersey as a couples and family therapist, in addition to all the other work I do.
“It’s important to understand that I didn’t have this whole life planned,” Linda continued. “I didn’t have a clear vision. I was really just a mom on a mission, just making sense of my life and managing the things that came at me head-on, and this is how I brought it all together.”
For more information about Linda Wachtel’s private practice, visit her website here.
When asked about the highlight of working with these foundations, here’s what Linda said: “The greatest highlight is being able to see the relief that you can bring to a family when they are able to turn away from the worry of basic needs (like paying the rent, or their car payment, putting food on the table, or putting gas in their car) and are able to turn towards their children and just take care of them. That’s the greatest accomplishment. Alongside, is the ability to build support and community where previously it didn’t exist. The support is amazing. In both foundations, I work with the most incredible teams of dedicated people. Without each of them this support would not exist.
“There’s a part of me that feels like an imposter in getting this award,” Linda continued, “because I know there is nothing that I have done here that I could’ve done without all of these other people joining me and supporting me. It’s only possible when people come together to do the work.”
Linda is thankful that, because of her vision, there are programs for survivors, their families and communities for the families going through bereavement. Families have life-changing support that they didn’t have before, and she’s grateful to be a part of something so critical to the families affected.
“I would really like people to know the importance of talking about children who have brain tumors because so often it’s the thing people want to look away from. It’s not a pretty story, but it’s a necessary story. We need to talk about these children, we need to get them help, we need money for research, and they need all kinds of support.”
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