WHY WE'RE DOING THIS
Hello. My name is Cate Elam, and this is the story
CATE'S BUCKET LIST
When I returned to Holland, I went to ophthalmologist expecting a quick check-up and some eyedrops. Instead, I was diagnosed with a degenerative genetic disease. Like many people who wear glasses, it was a common fact that I had less than adequate vision, but the issue was never more than severe astigmatism. When the doctor diagnosed me with RP, it felt like she had diagnosed an insignificant scratch as sign for amputation. And on top of that, this genetic disease was virtually unheard of by most of the general public. Was I suppose to be scared? What did this mean for my future? The lack of information was more troubling than the predicted side effects. This feeling of confusion sparked the decision to start RP Hope, a place were the general public could turn to if they wanted to understand and support the scientists working to advance technology and treatments for RP.
"With this time, I plan to travel and create vivid visual memories."
My family has always prioritized seeing the world. As such, my first trip to Europe was at age 11. Then, the summer before freshman year, we moved to Holland. While in high school, I was lucky enough to visit numerous countries and continents. At the time, I took it a little bit for granted. No longer.
Now, I will collect something small from each place I visit, maybe painting scenes to remember a moment, a feeling, a laugh. Consider collecting them yourself.
A message from Cate
dehydration or exhaustion, but the spots persisted even after the bike tour ended.
RP Hope began. It was the summer before junior year
of high school,
on a trans-national cycling tour from
(Big Ride 2.0),
Amsterdam to Rome
when I first noticed
The journey took 28 days, exceeded 1,200
greatest adventures of my
miles, and created one of the
the burning sun, during those long stretches of
dotted my vision. I wrote it off as
road, little black splotches
WE HAVE TO DO SOMETHING
A message from Cate's parents to friends, family and readers.
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.
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.
7 STAGES OF GRIEF
acceptance and hope
shock and denial >
pain and guilt >
anger and bargaining >
upward turn >
working through >
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 filing paperwork to form a nonprofit 501(c)(3). 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.