Exciting News: The STXBP1 Foundation is Growing!
Hey, STXBP1 Community!
We've got some great updates to share with you. As we continue our mission to raise awareness and find a cure for STXBP1 disorders, we're thrilled to announce that the STXBP1 Foundation is expanding. The groundbreaking research and scientific strides we're making are not only a ray of hope for those affected by STXBP1-Related Disorders, but also have the potential to impact individuals and communities with other genetic disorders – a chance to make a real difference in STXBP1 and beyond.
To help us achieve our goals, we're bringing on two new board members: Daniele Greiner and Jason Stanaland.
Meet Daniele Greiner: Our Fundraising Strategist
Daniele and her husband, Chris, proudly share their journey as parents to Cecelia, who received an STXBP1 diagnosis in March 2018, and her twin brother, Marshall, who has an autism diagnosis. They draw renewed strength from Cecelia's smile and the joy she finds in everyday moments. Filled with the same inextinguishable light that shines through the hearts of the STXBP1 community, Cecelia's relentless spirit reminds her family to cherish the bright moments of today, while persistently pushing toward a hopeful future for tomorrow.
With 16 years of experience in nonprofit development, Daniele has nurtured meaningful donor relationships at prestigious institutions such as Children’s Hospital of Philadelphia, The Franklin Institute, and Philadelphia Zoo, where she currently serves as Director of Major Gifts and Planned Giving. Fueled by a passion for philanthropy, Daniele is committed to partnering with the STXBP1 community to make a meaningful difference for our families.
Meet Jason Stanaland: Our Connection Expert
Jason comes to the board to foster meaningful connections and effective communication. He calls Atlanta, Georgia, home and holds a bachelor's degree in psychology from the University of Georgia. Jason’s daughter, Juniper, was diagnosed with a STXBP1 deletion in 2017. Since then, Juniper has overcome many challenges and done so with a smile on her face. She is so sweet, gentle, and kind that Jason often refers to her as “zen master” and tells people that she is missing the “mean gene.”
With over 15 years of experience in healthcare, Jason is a seasoned marketing and technology leader, bringing a wealth of knowledge to our team. He excels in innovating clinical communication solutions, enhancing communication platforms, and crafting comprehensive marketing strategies. His expertise covers positioning, pricing, messaging, and campaigns, along with website development, presentations, and content management. Jason is eager to leverage his skills for the foundation's vital mission.
Daniele and Jason are here to bring their expertise and dedication to our mission. Along with their appointments to the board, a new Marketing Committee is being formed, which will help the foundation accelerate efforts to raise awareness and funding. Together, we're making strides, spreading hope, and making a tangible difference in the lives of those affected by STXBP1-Related Disorders and beyond. Thanks for being a part of this incredible journey with us!
The Foundation welcomes Daniele and Jason to the team. You can read their bios on our Team page here. And, if you are a Marketer and want to help our newly formed STXBP1 Foundation Marketing Committee, send us a note at marketing@stxbp1disorders.org.
