Vanessa Vogel-Farley joins our Board!
As we pass our 17th anniversary as being officially incorporated into a nonprofit organization, we celebrate our past and look to our future.
It was just forty-five years ago that the first description of a person with idic(15) was published. It wasn’t until 1994 that the community now known as the Dup15q Alliance was originally founded under the name IDEAS, with a membership of just 13 families.
Through the hard work and support of families, past leadership, volunteers and donors, our advocacy and awareness has led to over 2,200 Dup15q families finding support in the Alliance.
Dup15q Alliance is thankful for the past 5 years of service from Executive Director, Vanessa Vogel-Farley. Before serving the Alliance she worked at the University of Minnesota Center for Neurobehavioral Development and as the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, collaborating with researchers at MIT and Harvard.
Vanessa joined the 2015 Dup15q Alliance Family Conference as a researcher, getting to know our families and the uniqueness of our disorder. The Dup15q Alliance quickly hired Vanessa as our first paid full-time executive director in 2016! At that time, Dup15q Alliance represented around 1,000 families served by 9 clinics.
Vanessa has lead the charge in:
- Collaborating the combined efforts and creating the 15q Clinical Research Network allowing for the expansion of our Dup15q clinics to over 21 worldwide
- Driving our natural history research with a robust data platform through the LADDER database
- Leading our first clinical trials and working toward additional drug studies to try and treat various symptoms of the syndrome
- Forging partnerships and collaborations with many organizations in the rare disease space including the Commission on Novel Technologies
- Bringing together world-class physicians and researchers who are dedicating their time and knowledge to helping characterize dup15q syndrome and exploring new treatments.
All while staying true to our mission of providing family support and developing programs that have grown along with the organization.
While we are sad to see Vanessa move from the seat of Executive Director, we are thrilled that she is taking a position on our Board of Directors. As a board member, Vanessa will continue to focus and drive the science and research efforts of Dup15q Syndrome.
From Vanessa Vogel-Farley
“Dear Dup15q Alliance Community, Partners, and Supporters,
The past 5 years of serving the Dup15q community as the executive director have been one of the greatest honors of my career. The way that our community has welcomed me and become a part of the fabric of my being, is so so meaningful to me.
The Dup15q Alliance Community is growing exponentially as we see increased genetic testing and we know that the Alliance needs to grow with our ever-expanding and ever-aging family. Bringing in a non-profit professional in Carrie Howell as our new executive director truly enables us to energetically pursue our goals.
As the promise of the creation of new therapeutics for dup15q syndrome is coming to fruition, I am so excited to continue to drive this forward for the community in my role on the Dup15q Alliance Board of Directors.
I look forward to helping lead the Dup15q Alliance as part of the Board of Directors in our mission of empowering individuals living with dup15q syndrome and other related rare diseases to reach their full potential by advancing breakthrough research and life-changing therapeutic treatments, promoting advocacy and supporting families affected by dup15q syndrome.
Together with the dup15q syndrome community, we envision a world where families, researchers, clinicians and advocates enable individuals with dup15q syndrome to thrive.”