When Lauren and Marc’s son Holden was diagnosed with it a little over two years ago she found that her sole resource for learning about her son’s condition was the Dup15q Alliance. As they left the geneticist’s office, Lauren and Marc pored over the Dup15q Alliance’s website for hours, learning everything they possibly could about Dup15q Syndrome. Lauren says, “Upon registering with the alliance, I was immediately connected with our regional rep and she was able to talk me through the diagnosis and help us understand what types of therapies and specialists Holden would benefit from.” This call let Lauren and Marc exhale. They were not alone.
Photos care of Lauren WeissbergDup15q Alliance is the only organization that exists to support families like Holden’s. Through the alliance, families of “Dupers” from around the world can connect, share their experiences, learn from one another, and take turns providing and receiving much needed support. This is particularly critical since very few people - doctors included - know anything about Dup15q Syndrome. The lack of knowledge about this rare genetic disorder makes treatment extraordinarily difficult.
Photos care of Lauren Weissberg
To insure clinics specializing in working with Dupers around the world are able to stay operational, the Dup15q Alliance perpetually fundraises. This is the only way - at least to date - that individuals affected by Dup15q Syndrome can continue to receive appropriate medical care. The Alliance also raises money to fund ongoing research, as scientists themselves need to better understand the condition before they can determine ways to offer children affected by Dup15q Syndrome an all-around better quality of life. Lauren insists, “These things cannot and will not happen if the Dup15q community does not have a voice, which is why we all shout loud and proud about our children each and every day.”
Lauren, Marc, big brother Reid, and Holden have hosted two local fundraisers in two years; as Lauren points out, they are not content to “simply sit around and wait for things to happen.” When asked how others can support her and her team’s work, Lauren encourages us to “Be willing to listen and learn more. And always BELIEVE!” Use checkout code GIVE955 right now to donate 10% of your purchase price to the Dup15q Alliance and to show that you do indeed believe increased awareness, deeper understanding, and effective treatment are crucial and within our collective reach. You can also find Holden on Facebook.