WHY WE'RE DOING THIS
We have to do something
As parents, we dream the biggest dreams for our children. We see them score a goal, win their heat, or get a lead character in a play and for a brief moment, we allow our minds to dream of the Premier League, the Olympics and Broadway. And, as they experience disappointments, we know these are the moments that rebalance their universe, build character and make them stronger. But, we don't expect to learn that a child has a life-altering, rare, degenerative disease. This sits well outside of the watch > celebrate > hug > move-forward moments of parenting. It’s surreal and heartbreaking, leaving a parent feeling utterly helpless.
7 STAGES OF GRIEF
acceptance and hope
shock and denial >
pain and guilt >
anger and bargaining >
upward turn >
working through >
Even knowing a disease, such as RP, isn't life threatening, doesn't help in avoiding the 7 Stages of Grief. We had to process the news before returning to the “nothing can stop you”, “you’ve got this”, “you’re queen-of-world“ cheerleading that supposed to blanket a child in love and light, and reminds a child that she will be ok.
Doing Our Part
Compounding our family's year was another surprise: within two weeks of Cate's 2019 diagnosis, Carin was diagnosed with stage 2 breast cancer. But, the experience for the two women was very different. For Carin, there was a six-month treatment plan, and a five-year plan for post-operative care. For Cate, there has been essentially nothing. To find next steps for Cate, we researched alternative medications (e.g., acupuncture, supplements), downloaded the registry of clinical trials, and waited for her doctors to advise us. After waiting for more than a year, we decided that we had to do something. As Cate mentions above, RP Hope is our Stage 7 ~ our acceptance and hope.
We're a recognized 501(c)(3) corporation with tax exempt status. Over time, RP Hope wants to become a valuable resource for families looking to learn more about non-syndromic retinitis pigmentosa; offering a layman's introduction to complex medical papers and directing families to additional resources. On these webpages, you'll also see that we've started to compile relevant academic papers and articles by gene type, starting with Cate's gene mutation.
We will focus all of our energy, experience and funding on treatments for non-syndromic retinitis pigmentosa (RP). Our board of directors will include, Eric Elam, Tim Geistlinger, Kevin Unger, and Lyndon Elam. To date, all start-up costs and activities have been provided by Cate's family. And current event planning has been supported by friends and family. Therefore, your donation will go toward a search for treatments and/or prevention of RP.
We're just getting started and we look forward to working with you on this journey.