Throughout the year, ACS CAN and its volunteers work to impact the cancer burden by making sure lawmakers are aware of the issues that matter to them at all levels of government. September marks one of the most powerful and exciting times of the year as we gather hundreds of our advocates in the nation’s capital as part of our annual Leadership Summit and Lobby Day.
Guest Post: Giving a Face to Childhood Cancer Action Day
Heather Adler has been an ACS CAN volunteer for the last five years and is currently an Ambassador Constituent Team Lead (ACT Lead) in Marshfield, Wisconsin. Her daughter, Abby, was diagnosed with retinoblastoma when she was five and now, at age 12, she is a cancer survivor with a passion for cancer advocacy. Heather and Abby traveled to Washington, D.C. on May 2 to urge their Members of Congress to increase funding for childhood cancer research at Childhood Cancer Action Day. I’m pleased to share this guest blog post from Heather sharing her experience with her daughter advocating on behalf of cancer patients.
Abby’s cancer journey was short, less than a year, but it has made an impact on us for a lifetime. It all began when Abby was four years old, and I thought she had a lazy eye. She started having trouble with her vision, and we saw a specialist who informed us she had a tumor taking up fifty percent of her left eye. Within a month, Abby’s eye was removed and she received a prosthetic eye. That’s when we received the devastating news the cancer was headed toward her brain. Fortunately, six months of chemotherapy treatment worked, and Abby was declared cancer-free.
Today, Abby doesn’t let anything hold her back. She stays very active by playing volleyball and is one of the best defenders on her soccer team. Now that she’s going into middle school next year, she has become more vocal about being a cancer advocate and sharing her story. She has accompanied me to Congressman Sean Duffy’s (R-WI) office before when I have advocated for an increase in cancer research funding and has seen firsthand the impact this advocacy work has had on me. She finds it exciting that we’re speaking up for those we care about and can give a voice to those who may not have one.
That’s why it was so important to us to be in Washington, D.C. to join more than 200 other cancer patients, survivors and family members for Childhood Cancer Action Day, a two-day event organized by the Alliance for Childhood Cancer, a coalition of which ACS CAN is a part. We had the opportunity to meet with Representative Duffy, Senator Tammy Baldwin (D-WI), Senator Ron Johnson (R-WI) to advocate for increased funding for cancer research at the National Institutes of Health (NIH) and for ask for their support of the Childhood Cancer Survivorship, Treatment Access and Research (STAR) Act which would advance childhood cancer research and increase transparency and expertise for research. It was an honor to be a part of such an amazing experience and to be able to share it with my daughter was truly a special moment for both us.
As Abby grows, I’m seeing her passion for helping others grow too. She recently told me her dream is to become an eye doctor to someday help others just like her. She said she thinks of her advocacy work now as speaking up for her future patients. Watching her do just that this week, has meant more than a mom can put into words. I know this is just the beginning of her advocacy journey and I’m grateful for the opportunity to walk with her down this path.