“A look back at 2021” January 2022 Newsletter

Happy New Year from CRF!

From everyone at CRF, we hope you have all had an incredible New Year. We are looking forward to 2022 and the big things we will be able to achieve. But first, we want to take a look back at some of the highlights from 2021.

In January 2021, CRF began a new initiative called ‘Beyond the Tumor,’ a series of articles featuring the stories of current DIPG warriors. We had the opportunity to interview some incredible individuals, including 22-year-old Maria Kuenster who found out she has DIPG right after graduating college. In place of accepting a new job offer, Maria had to research clinical trials in order to save her own life. She is now taking part in the CAR-T Cell Therapy trial at Seattle Children’s hospital.

Also in January, we were able to welcome two new people onto our Board, Melinda Colon Cox, and Michael Narvaez.

Melinda Colon Cox is a Commercial Litigation Partner at Parker Ibrahim & Berg LLP. She is a proud Puertorriqueña and is happily married to Kevin E. Cox with whom she has a beautiful 3-year old son, Logan Carter Cox. Melinda is actively involved in promoting and developing the advancement of Latinxs in the legal profession and community at large and finds passion in helping others in need.

Michael Narvaez is a 20+ year veteran of Wall Street Investment Banks and Owner of ANS Entertainment LLC, a boutique DJ and event services company. After losing his cousin, Santiago Buther, to DIPG last year, Michael was moved to join CRF and help make DIPG a thing of the past. Michael said, "Sadly, this January when Santiago gained his wings, a sense of communal responsibility was awoken within me again. I am firmly committed to helping prevent any other child and their family from having to suffer this type of loss. To not combat this disease would be a waste of my time on this Earth."

March was a big month for us, filled with hopeful stories of DIPG warriors and new awards. We had the chance to meet with Emily Hood, Elyse Johnson, and Weston Wiens. The fight and survival of these three warriors is beyond just luck. They are a result of true inner strength and the support of dedicated medical professionals, family members, friends, and supporters.

In March, CRF received a Platinum rating from Guide Star for the fourth year in a row and was named a Top-Rated Nonprofit for 2021 by Great Nonprofits for the fourth year in a row! This recognition is very meaningful to our foundation and team.

In July, we received an update from one of our warriors, Emiliano Bermejo. That month Emiliano started participating in the Mebendazole Clinical Trial at Johns Hopkins in Baltimore. Thanks to everyone’s contributions, CRF was able to cover all the hotel, travel, and daily living expenses for the duration of their stay.

Later in the year, we got another update from Emiliano. He was improving from the treatment and had even got a new service dog named Frida that he fell in love with at first glance.

July also brought the tragic passing of one of our incredible DIPG warriors Jace Ward. Jace battled against DIPG for 25 months. While fighting, Jace continued to take classes online at Kansas State University and held an internship with the Emerson Collective where he frequently worked under Reed Jobs, the son of Steve Jobs. Jace worked within one of the branches of the Emerson Collective focused on rare cancer policy reform. Jace was an incredible warrior, son, and friend. The work that he did continues to go on and change the lives of others. We are forever thankful to have known Jace and will continue to fight for him.

We also held our 4th CRF 5k in July! That day was particularly hot, but it did not stop anyone from enjoying their time and walking to support the fight against DIPG. One of our most treasured moments during the event was presenting Eric and Cynthia Buther the Golden Wings Award in honor of their son Santiago who they lost to DIPG two years ago on January 17, 2020. The Buthers flew in from North Carolina to participate in the walk and brought an army of their family and friends in honor of Santiago. All in all, the 5k was a huge success and helped us to raise more funds for DIPG research

In August, we held our 5th Annual Flashback Boat Ride! It was a night filled with amazing performances by George Lamond and Samy P El Conde, and incredible DJs like Big Paul, Rob Lo, Michael Narvaez, and Steelo. All proceeds went to support DIPG research and families affected by the disease.

In November, we held our 12th Annual CRF Celebrity Gala. We had over 500 people in attendance including many special guests such as CRF board member Kenan Thompson, Gio Urshela, AJ Calloway, Fredro Starr, and so many more. From our hard work in 2021 and the proceeds from the gala, we have donated approximately $400,000 (Four Hundred Thousand Dollars), to research, trials, and family support. Nights like these are when we show the direct results from coming together so we can make a massive impact in the lives of those affected by DIPG. We are all so thankful for everyone that attended or supported the gala.

To view a short video with the highlights from the 12th Annual Gala Follow Below

To view our CRF Work/Mission 2021/22 Follow Below

Shortly after the 12th Annual Celebrity Gala, CRF donated over $300,000 (Three Hundred Thousand Dollars) to Dr. Mark M. Souweidane. This was our largest single donation and the largest donation ever given to the Weill Cornell Brain and Stem Center by a family-run nonprofit. CRF also made a donation to our other medical partner, Dr. Oren Becher. These donations were able to help research new DIPG treatments and bring us closer to our goal of ending DIPG once and for all. We also contributed to families who are affected by DIPG.

The year closed out with the exciting news of our incredible Board Member Edward Caban being appointed as the NYPD’s newest Deputy Commissioner! He worked his way up from officer, to sergeant, to an inspector, to adjutant, and now to the 2nd highest-ranking position in the NYPD. We are proud to have him on our board and we know he is going to do an amazing job at making New York safer.

We would like to take the time to express our gratitude to some key players within our Foundation. Thank you to our Board of Directors, Board Members, our generous donors, and our dedicated volunteers. Thank you all for your support and your deep desire to find a cure for DIPG.

We look forward to seeing you this year as we continue Full Steam Ahead toward curing DIPG once and for all!

You can be a part of the journey of finding a cure for DIPG, by going to our website cristianriverafoundation.org, attending our events throughout the year, following us on Instagram, Facebook, LinkedIn and Twitter or simply donating to our cause. Together, we can bring an end to DIPG.

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.

Sincerely,
Cristian Rivera Foundation