Why the color gray for Brain Tumor Awareness Month? Gray matter in the brain are the parts that allow us to control our muscles, use our senses like seeing and hearing, store memories, feel emotions, allow us to speak, and make decisions. Gray seems like a boring color, but gray matter allows us to be fully human and enjoy the best parts of life.
Similar to the color gray, children diagnosed with brain tumors don’t receive the attention and funding for research they deserve. This month is dedicated to changing that by spreading awareness and increasing donations toward research and families affected by brain tumors like DIPG.
During this special month, we have some important updates and stories to share!
4th Annual CRF Full Steam Ahead 5K
Saturday, July 17th, 2021
9:00 am – 12 pm
Registration starts at 8:30 AM
Van Cortlandt Park, Cross Country Parade Ground 1
West 242nd Street & Broadway, Bronx, NY 10471
We are so excited to gather together again and walk against DIPG!
Visit our 4th Annual CRF 5K Event Page for more information.
If you are or your company is interested in sponsoring or providing in-kind donations for the 5K, please see our Sponsorship Opportunities page for more information.
All registrants are encouraged to surpass their suggested fundraising goal towards their 5K participation. Rallying donations will help spread DIPG awareness within your networks while funding life-saving research and supporting DIPG families in need.
There will also be competitions and prizes on the day of the event. The first step is to SIGN UP! Register here today and make a difference in the lives of kids facing DIPG.
Bi-Annual Board Meeting
This month we had our best Board Meeting thus far. After being unable to meet in person for over a year, our members felt revved up to make 2021 our best year yet.
Our heroes Jace Ward, Emiliano Bermejo, Lisha Ayala, and their families made a virtual appearance and we were all so happy to see them. We have so much in store for 2021. Everything we do is for our warriors like Jace, Emi, and Lisha and for everyone affected by this terrible disease around the world.
Catching up with DIPG Warrior Emily Hood
Another warrior we had the chance to catch up with is Emily Hood. We first met Emily a few months ago in February of 2021. Emily was diagnosed with DIPG in February of 2019. Since the last time we chatted with her, she has dropped out of the CAR T Cell Trial in Seattle. This was a personal choice, and she still strongly encourages others to consider this trial. Her tumor remained stable during the CAR T Cell trial and she has also participated in another session of radiation. Now, Emily is taking new chemotherapy drugs and is noticing her symptoms improving!
In her free time, Emily has been enjoying watching Marvel movies. She is a huge fan and has most recently been watching The Falcon and the Winter Soldier. She also enjoys spending time with her family and watching cat videos. Emily is planning to begin classes at her local community college soon! Follow below to read her full update. We’re so proud of Emily and the amazing positivity she’s carried battling DIPG for over 2 years. Full Steam Ahead! cristianriverafoundation.org/beyond-the-tumor-update-emily-hood/
2021 Fundraising Events
We are ecstatic to announce we will be having all fundraising events in person this year! We are so excited to see all of your faces, please mark your calendars on all of the dates below. More information to come!
4th Annual CRF Full Steam Ahead 5K Saturday, July 17th 2021 Visit Event Page
12th Annual CRF Celebrity Gala Wednesday, November 17th, 2021 Visit Event Page
Raffle Winners
Thank you to everyone who participated in our raffle! Your participation in this project allows for more research into DIPG, assists families who are affected by this terrible tumor and helps us to continue spreading DIPG awareness each day. Congratulations to all of our winners and Full Steam Ahead! The winners are listed below. Watch the announcement video at cristianriverafoundation.org/2021crfraffleprojectwinners/
1st place: 2 Premium Tickets to a NY Yankee Game (2022 Season)
Carlos Colon (#4804) 2nd place: $200.00 Gift Card to Salsa Bembe Restaurant, Yonkers, NY
Amanda Morales (#2442) 3rd Prize: $150 Gift Card to Thalassa Restaurant, Tribeca, NY
Wilda Diaz (#3481)
May Board Member Spotlights
Vanessa Rodriguez is a New York Real Estate agent serving both Westchester and the Bronx. She has known our founder John “Gungie” Rivera and Cristian for many years.
Vanessa is very interested in bringing awareness to DIPG and believes that promoting awareness is the best thing we can do aside from raising money since many have not yet heard of this horrific disease. One of her favorite parts about the organization is the personal connection that we have with families affected by DIPG. She loves meeting the families and understanding how much of an impact DIPG has on them and being able to witness the human component behind the foundation. This fuels her enthusiasm and passion to help. We know that her energy and enthusiasm will spread to everyone she meets! cristianriverafoundation.org/board-member-spotlight-vanessa-rodriguez/
Maggie Meehan is a Visiting Nurse Association hospice social worker for Ocean County, NJ, and has been a long-time supporter and board member of the Cristian Rivera Foundation. One of Maggie’s favorite things about CRF is that she can give back and really make a difference in people’s lives when they need it the most. In Maggie’s words, success for CRF would clearly be finding a cure, but on top of that, success would also mean supporting the kids and families as much as we can so that we never have to turn down a child for treatment because they can’t afford it or because we can’t support them. For Maggie as a board member, she just wants to be the best she can and support as many people as possible. cristianriverafoundation.org/board-member-spotlight-maggie-meehan/
Michael Narvaez grew up in the South Bronx, surrounded by friends and family members that were struggling to fight their own obstacles and addictions. Rather than succumbing to the challenges around him, his life taught him the importance of family. Through persistence and dedication, Michael worked his way through college and became the VP of Santander Bank’s NY Branch. DIPG came into his life when his young cousin Santiago Buther was diagnosed with it. Relying on the family values that had carried him so far, Michael knew he had to do something to stop DIPG from affecting other families. He joined CRF, after realizing that Cristian had the same tumor that Santiago did. Michael’s values are at the core of CRF’s mission and he helps us stay true to ourselves as we grow as people and as an organization. cristianriverafoundation.org/board-member-spotlight-michael-narvaez/
Jarrad Seuferling has been the owner of one of the largest security companies in the NYC area and a powerhouse in the venue and entertainment industries for the past 25 years. As a prominent club and restaurant owner, Jarrad had known of our founder John “Gungie” Rivera for many years, but did not truly connect with him until Jarrad’s security company was asked to work the Cristian Rivera Foundation’s 7th Annual Celebrity Gala. After witnessing the foundation’s work and mission first-hand, Jarrad immediately felt compelled to get involved. Jarrad enjoys connecting with people and working to support the CRF mission. This dedication was what earned Jarrad the 2018 Cristian Rivera Foundation Service and Dedication Award. cristianriverafoundation.org/board-member-spotlight-jarrad-seuferling/
Melinda Colon Cox grew up in Rutherford, New Jersey. Her parents were born in Puerto Rico and moved to the U.S. where she lived between Jersey City and Middlesex County for many years. Today Melinda is married to her husband Kevin and is a dedicated mother to her 2.5 year old son Logan. Melinda attended Union College where she received her Bachelors in Political Science and subsequently obtained her Juris Doctorate Degree at the Rutgers School of Law. cristianriverafoundation.org/board-member-spotlight-melinda-colon-cox/
Spread the Word
During May, consider helping us to spread the word. ‘Go Gray in May’ and use the hashtag #GrayMay and #CRF to spread awareness about brain tumors and DIPG. There is a large lack of funding for research and the public is unaware of this devastating diagnosis of DIPG. CRF is always striving to share stories and knowledge to raise awareness. Once people are aware of DIPG, they will often be inspired and join the fight! We have heard of the impact that is created when CRF supporters have spread information. One connection or donation will often result in a long-term supporter of our mission. Consider sharing facts, stories, or personal experiences with DIPG. Thank you all for your support in ending DIPG. Together we can be a part of ending this awful disease and make sure that no other family has to experience the loss of a child! #FullSteamAhead
Our Mission
The mission of the Cristian Rivera Foundation is to help find the cure for
Diffuse Intrinsic Pontine Glioma (DIPG),
an inoperable and incurable brain stem tumor.
What is DIPG
(Diffuse Intrinsic Pontine Glioma)?
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, it’s young victims only have an average of 3-18 months to live, after they’ve been diagnosed. There are NO SURVIVORS.
Who is
The Cristian Rivera Foundation?
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 Ann & Robert H. Lurie Children’s Hospital and the Lurie Cancer center at Northwestern University. Both Doctors are conducting promising research and trials that have shown promising results. We are CLOSE to a CURE!
How Can You Help:
Help us by making a Donation.
Every Donation Big or Small, will help us achieve our goal.
Help spread the word to your family, friends and Colleagues.
Thank You again and may this be the year we say goodbye to DIPG,
(Diffuse Intrinsic Pontine Glioma),
FOREVER!
Founder:
John “Gungie” Rivera
"Forever Cristian’s Daddy"
Board of Directors:
Carlos Yepez and Darlene Rodriguez.
Committee Members:
Aldo Marin, Alex Arizmendi, Alex Garcia,
Carlos Colon, Elis Pacheco, Fernando Ferrer,
Francesco Quattrone, Jarrad Seuferling,
Kenan Thompson, Luis Guzman,
Meiling Macias Toro, Paul Pristavec, Rafael Toro,
Rena Kliot, Steve Cox, and Vito Bruno.
Supporters:
Ben Velazquez, David Rodriguez,
Dr. Manuel A. Moran, Karla De Epstein,
Michael V. Narvaez, and William Pla.
Chairman of the Board:
Andy Epstein
Director:
Sarde Laurente
Committee Friends:
Alberto Torres, Edward Caban, Ed Martin,
Maggie Meehan, Mark Rosner, Melinda Colon Cox,
and Vanessa Rodriguez.
Honorary Committee Members:
The Late Anthony Mason
and The Late Miriam Colon.
