It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
E. Gay Grossman
Parent Advocate | ADCY5
- San Diego, California
- Contact info: Website | Email | Twitter | Facebook | Linked In
- ACDY5 affects approximately a few hundred people worldwide
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
I became an advocate for the ADCY5 rare disease community out of necessity. My daughter was the second patient diagnosed with the gene variant and there was little research happening at that time. Today we have over 100 patients diagnosed with the ADCY5 variant and three stem cell projects in the works.
What was your first success or defining moment as a rare disease advocate?
Personally I felt success as a rare disease advocate when an organization asked me to speak. Having someone recognize that my decades of experience caring for my daughter might positively influence others was a huge compliment.
Share some of your biggest accomplishments as a rare advocate?
Anytime I can help another family, I feel a sense of accomplishment. The time I have devoted to IEP’s, patient care, insurance coverage, and other advocacy challenges should benefit someone besides my own daughter. Besides sharing tips, success has been found through science as we now have three stem cell lines growing and two drug discovery projects in the works. Seeking out science is how we will accomplish our goal of finding treatment.
Share some of the hard realities you faced advocating for your rare disease.
A hard reality of advocating for a rare disease is the solitude you feel when searching. There is no paved path and at times it can feel like a continual uphill climb. Knowing that every step is important motivates me to keep climbing.
What project(s) are you working on now for your community?
My daughter and I have just published a Rare Disease coloring book that will spread the awareness of ADCY5, but more importantly of Rare Disease. My goal is to provide a tool for parents starting school with their child who will attend school with equipment or assistance that other children haven’t seen before now. My daughter’s messages are to include everyone in your circle of friends and your life will be brighter and simply be kind.
What advice would you give to an advocate just starting out?
The most important advice I can give to someone just starting out in an advocacy role is to be gentle with yourself. This is a lifestyle change, an add on to your already chaotic life. If you can do one small things every day to move your organization forward or to help someone who is struggling, you are a success.
Why do you find working with advocates from different disease groups beneficial?
I find working with advocates from different disease groups beneficial because we are all on the same road even though we might be talking about a different disease. The parents of a child with a Rare Disease are living with the same struggles of every other parent with a sick child. The support I have found because of other parents is immeasurable.