May is Brain Tumor Awareness Month and The Cristian Rivera Foundation is showing our support by going gray for May! Like many other brain tumors, research for DIPG is grossly underfunded, yet it is one of the most deadly forms of pediatric cancer in existence. CRF is beyond lucky to have such dedicated supporters who are making a cure for DIPG possible. In this month’s newsletter, we will highlight all the ways you can help contribute to the advancement of DIPG research, such as attending CRF events and making donations. We also have updates on our DIPG Warriors Maria Kuenster and Emiliano Bermejo, and we will introduce you to our newest Warrior, Jesselyn Silva. As always, it’s full steam ahead into the month of May as we continue to work toward our mission of ending DIPG once and for all.
Last month, the CRF team took the time to interview DIPG warrior, Jesselyn Silva. Jesselyn Silva is a fiery young woman, who prior to her DIPG diagnosis in July of 2021 was well on her way to becoming an Olympic boxer. Jesselyn was ranked the number one female boxer in the nation for two years until her DIPG diagnosis made it difficult for her to train. However, Jesselyn believes that her time spent boxing has taught her valuable lessons that she carries into her everyday life. The most important lesson she learned was to “never give up”, and she has taken that lesson with her throughout her cancer treatment.
Jesselyn is currently undergoing radiation treatment in Harlem following a three-week hospital stay over her 16th birthday. During that stay, Jesselyn underwent a 6-hour neuro procedure to remove a small part of her tumor. She spent three weeks in the hospital recovering and is now back at home with her family. During a trial she was a part of, it was discovered through genetic testing that Jesselyn carries a mutated gene that has been known to cause DIPG. Jesselyn is currently recovering from the surgeries at home in the presence of her loved ones.
In her spare time, Jesselyn loves to spend time with her family, read, and create art. Her family is extremely close, and Jesselyn’s Dad and younger brother are at her side always. Jesselyn’s father Pedro Silva compliments her by saying “She always got the job done, and she is a special child. My family keeps her motivated, pushing her and being there for her all the time”. Jesselyn is very faith-driven and believes that with the help of God and her family, she can get through anything. She says, “I am Faith-driven and I believe God will help me get through everything just like he helps everyone else”.
Jesselyn is from Bergenfield, New Jersey, which is located only a short drive from the foundation’s headquarters. Her dad learned about the foundation through a mutual friend, Carlos Yepez, who is on the Cristian Rivera Foundation Board of Directors. We are so grateful that Carlos connected us to Jesselyn’s family so that we are able to have the opportunity to speak to this incredible young woman.
Maria Kuenster is an incredible young woman who was diagnosed with DIPG shortly after her college graduation in June of 2020. She studied healthcare management while at University and was hoping to go into technology sales following her graduation. However, her career plans were put on hold due to her DIPG treatment. Maria now hopes to start a career in medical device sales.
Since we last spoke with Maria, her life has changed. It is rare for adults to get diagnosed with DIPG, and her age has also hindered her from joining clinical trials in the past. However, Maria was able to get on a clinical trial which greatly improved her DIPG treatment. Maria’s tumor is now stable according to her most recent MRI, due to the medication she is on which is an IDH inhibitor that directly targets her tumor’s IDH mutation. This is great news for Maria, who was very happy to hear that her tumor is stable. She says that aside from fatigue and headaches, her current treatment does not affect her day-to-day life too much, which she is very happy about.
Maria’s advice for any new DIPG patients and their families is to advocate for themselves. She thinks that because DIPG is so rare, with only 200 cases per year in the US, it is necessary to advocate for yourself and make sure that your or your child’s needs are addressed. When asked if she had any advice for anyone else who is struggling with DIPG, she said, “I would just say the most important thing is to advocate for yourself, especially with DIPG. There are only about 200 cases in the United States every year so it’s super important to advocate for yourself and [find] out what is the best treatment for you,”. She learned to advocate for herself over time while undergoing DIPG treatment and thinks that teaching others about this cancer in order to get better care is incredibly important. Maria thinks that it is very important for CRF and other organizations like it to continue to advocate for patients since addressing patient needs is the most important thing.
Emiliano Bermejo is a cheerful 4-year-old boy who was diagnosed with DIPG in May of 2020 and has now been living successfully with DIPG for almost 2 years. When Emiliano’s parents, Josue and Andrea, were first told about their son’s DIPG, they were very afraid, never having heard of the disease before.
Emiliano is from Mexico, and at the time of his diagnosis, there were no clinical trials taking place there, meaning his family had little hope for treatment. However, through a great deal of research, Emiliano’s parents were able to find the name of his disease in English (DIPG) and begin to look for clinical trials to treat the young Emiliano in order to fight his cancer. Josue and Andrea revealed that due to language differences, receiving medical help in America was a challenge at first. However, every specialist they saw was someone that was recommended to them and they said that all of the doctors they have met here in the states have been extremely welcoming and warm to their sweet little boy.
They connected with CRF through social media, after making accounts across several platforms in order to fundraise for Emiliano’s treatment in America. CRF was able to connect Emiliano with Dr. Souweidane and provide assistance to his family while they stayed in New York during his first clinical trial. Emiliano underwent a second clinical trial at Johns Hopkins in May of 2021, which he, unfortunately, had to be removed from due to nutritional issues that had the potential to complicate his treatment. Currently, Emi and his parents are awaiting MRI results to determine whether or not he is eligible for another clinical trial in Miami.
The best way to help advance DIPG research is to donate to DIPG research. DIPG is extremely underfunded in comparison to other forms of pediatric cancer, and the biggest barrier in the way of finding a cure is funding. At CRF, donations are paramount to our mission, but they are not the only way you can help. Ticket purchases to our annual events are a huge source of funding for our foundation and allow us to aid not only Dr. Souweudaine and Dr. Becher in their research, but children and families who need financial support as well. See this year’s upcoming events below.
Our 5th Annual CRF Full Steam Ahead 5K walk/run fundraiser will be happening Saturday, June 18th at Van Cortlandt Park. Every year we have so much fun bringing our community together with this event. Spend your Saturday with us, all ages are encouraged to participate. This year’s 5K is dedicated in part to CRF’s newest DIPG Warrior, Jesselyn Silva. We will be walking to support her, and kids just like her who are in need of a cure. To join us in this year’s 5K on Saturday, June 18th as an in-person walker or a virtual walker, click here.
Our 6th Annual CRF Flashback Boat Ride will be happening Saturday, July 16th, 2022. This annual event is always such a blast and we look forward to seeing each of you there! The purpose of this event is to raise money for DIPG research and bring the community together to celebrate the summer. We know that, together, we can find a cure and end DIPG once and for all! To join us on our voyage as we party for a cause, click here.
Cristian was born Friday, September 13th, 2002, and this year, 2022, marks the 13th year of his passing. At the Cristian Rivera Foundation, we believe this has special meaning, and we know that our 13th gala will be a beautiful time to honor Cristian´s life and legacy. Our 13th annual celebrity gala will be taking place Wednesday, November 16th, 2022, at Capitale in New York City. The Celebrity Gala is our oldest annual event and the one we at CRF look forward to the most. During this event, we plan to recognize those who have supported the foundation and to raise money for DIPG research so we can find a cure. To join us on CRF’s biggest night if the year, get your tickets here.
The Cristian Rivera Foundation is a 501 (c)(3) Non-Profit Organization that works tirelessly in order to raise awareness and funds to one day put a STOP to this disease. The Cristian Rivera Foundation funds the work of Dr. Mark Souweidane of Weill Cornell Medical Center – Memorial Sloane (Kettering) Cancer Center and Dr. Oren Becher of Pediatric Hematology-Oncology at Mount Sinai Kravis Children’s Hospital. Both doctors are conducting promising research and trials that have shown encouraging results. We are close to a cure, but we need your help!
The mission of the Cristian Rivera Foundation is to help find the cure for Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain stem tumor, and to raise awareness and provide assistance to families affected by DIPG in order to build a world in which it no longer exists.
Diffuse Intrinsic Pontine Glioma or DIPG, is a rare, inoperable brain stem tumor that predominantly affects children between the ages of 2 and 10. Only 200-300 cases are discovered in the United States each year and because there is no cure, its young victims only have an average of 3-18 months to live, after they’ve been diagnosed. There are no survivors, but the researchers we support are hard at work finding a cure.
Dr. Mark Souweidane is a researcher at Weill Cornell Medical Center. He utilizes brand-new targeted cancer therapies to inject cancer-fighting drugs directly into the DIPG tumor. The Cristian Rivera Foundation supports Dr. Souweidane’s research because we are sure that his treatments are critical to ensuring the health of DIPG patients and eventually curing DIPG. Dr. Oren Becher is a researcher at Mount Sinai Kravis Children’s Hospital. He uses genetically modified mice to test therapies for DIPG. Dr. Becher’s research has led to the discovery that a genetic mutation in the ACVR1 or ALK2 gene is responsible for DIPG in 25% of cases, and is now developing treatments for DIPG patients who have these genetic mutations. Dr. Becher is working incredibly hard to improve the health of those with DIPG, and we are hopeful that by supporting his research, we can assist Dr. Becher in his mission to cure DIPG.
Founder:
John “Gungie” Rivera
"Forever Cristian’s Daddy"
Board of Directors:
Carlos Yepez and Darlene Rodriguez.
Committee Members:
Aldo Marin, Carlos Colon, Fernando Ferrer,
Francesco Quattrone, Jarrad Seuferling,
Kenan Thompson, Luis Guzman,
Meiling Macias Toro,
Paul Pristavec, Rafael Toro, Steve Cox
and Vanessa Rodriguez
Honorary Committee Members:
The Late Anthony Mason
and The Late Miriam Colon.
Chairman of the Board:
Melinda Colon Cox
Executive Board Member:
Rena Kliot
Committee Friends:
Alberto Torres, Alex Garcia,
Maggie Meehan, Mark Rosner, Michael V. Narvaez and Samreen Malik
Supporters:
David Rodriguez, Edward Caban,
And Vito Bruno.
