CAMK2 Therapeutics Network Awarded $800,000 grant from Chan Zuckerberg Initiative
The CAMK2 Therapeutics Network was awarded a Cycle 3 Chan Zuckerberg Initiative Rare As One grant, providing $800,000 in funding over five years. This capacity-building grant supports the Network’s efforts to strengthen its organizational infrastructure, expand research and clinical collaborations, and accelerate progress toward improved care and therapeutic development for individuals affected by CAMK2-related conditions.
“I am Caoimhe. I have CAMK2”
Medical writer Heather Mason recently posted this article where we meet Caoimhe, a remarkable 17-year-old from Ireland living with the ultra-rare genetic condition CAMK2B. It sheds light on the science behind the disorder while, more importantly, sharing her family’s 11-year journey to diagnosis, the daily challenges they face, and their determination to create change.
Through her father Nev’s voice, the piece highlights the power of parent advocacy, the importance of being listened to by medical professionals, and the hope emerging from growing research and global connection. Above all, it celebrates Caoimhe herself—her resilience, joy, and the light she brings to a world that is still learning how to better support people like her.
For Mason’s full interview with Nev, see the link below.
Read the article
Research progress and support
January 22, 2024 — Amazing Erasmus MC, a newsletter from the Erasmus Medical Center in Rotterdam, Netherlands, describes CAMK2 gene therapy research by pediatrician Danielle Veenma and neuroscientist Geeske van Woerden, scientific partners of CAMK2 Therapeutics Network.
https://amazingerasmusmc.com/brain/hope-placed-on-gene-therapy-for-rare-camk2-syndrome/
Photo: Scientist Geeske van Woerden (left) and pediatrician Daniëlle Veenma (right) are working on genetic therapy for the CAMK2 syndrome.
Racine, WI Family Held a CAMK2 Fundraiser
On June 23, 2023, the local tv CBS 58 Station in Racine, Wisconsin shared the moving story of Eliciana “Lici” Gonzales, a 9-year-old from Wisconsin whose journey with the ultra-rare genetic disorder CAMK2B highlights both the challenges of delayed diagnosis and the strength of family advocacy. It follows her mother Amy’s early concerns, the years of medical testing, and the life-changing moment when Lici was identified as only the fourth person in the world with this condition. While detailing the significant medical and mobility challenges Lici faces, the piece also celebrates her vibrant personality and determination, and underscores the urgent need for research—reflected in her family’s efforts to raise awareness and funds so that families affected by CAMK2 are not left without answers.
Local TV station CBS 58 carried news of the fundraiser. https://cbs58.com/news/racine-family-to-hold-fundraiser-for-daughter-diagnosed-with-ultra-raredisorde
Oktoberfest Fundraiser and Auction
Ticket sales, raffles and a huge silent auction combined to raise $8,596 for CAMK2 Therapeutics Network in October 2023. The traditional Oktoberfest event, held in Derbyshire, UK, and attended by 200 guests, was organized by David and Jayne Burton in honor of their daughter, Evie.
The Jaeger Maestros band brought the full Bavarian feel to the evening that included catered fare, a selection of nine German beers and the culmination of a large silent auction, begun two weeks before the event. The successful bidders won holiday cottage breaks, sports memorabilia, admission to wine-tasting events and mine tours, comedy tour arena tickets, beauty treatments and more.
Guests watched a short homemade film that explained the work being done by the CAMK2 Therapeutics Network and how the condition affects the lives of Evie and others in the CAMK2 community.
LiciStrong Bags Fundraiser
Eliciana (Lici) Gonzales was diagnosed with a CAMK2B variation in 2017. At the time, she was the fourth person in the world known to have a CAMK2-related disorder.
For the past three years, her parents–Amy and Jesse Gonzales– rallied our community to come together for the annual LICISTRONG fundraiser to support Lici and her ongoing journey with a CAMK2B variant.
What began as a way to raise awareness has grown into a vital source of support for her continued medical care, helping fund essential trips to Boston where Lici works with a specialized team focused on CAMK2B patients, emerging treatments, and medications showing promise. With her care now centered there, every dollar raised goes directly toward these ongoing trips and giving Lici the best possible path forward.
Through bags tournaments, raffle baskets, and the incredible generosity of local families and businesses, LICISTRONG represents hope, persistence, and the power of a community standing behind one determined little girl.
Support the LICISTRONG Fundraiser here.
Diwali Brunch Champagne Fundraiser
Fifty guests attended the November 13, 2022, event, which raised $8,100 for CAMK2 Therapeutics Network and was held at the Palo Alto, Calif. home of Dr. Bonnie Dwyer, network executive director, and her husband, Ian Carroll, M.D.
Stanford Health Care Clinical Assistant Professor Dr. Alpana Gowda, longtime friend of Dr. Dwyer, hosted the Diwali-themed fundraiser.
“Diwali is the most important Indian holiday,” Dr. Dwyer said. “It celebrates light over darkness, good over evil and knowledge over ignorance — perfect concepts to represent our CAMK2 goals.”
