After suffering through so much bad news last week (federal shutdown, stock market crash, and all that other government CRAP), I was happy to receive a spot of good news in our mail here at Wallyhood that helped to put things into perspective:
Dear Wallyhood editors,
My name is Laura and I live close to QFC with my husband, cat, and adorable year old Rohan. I wanted to share with you a story of how community comes together and the joys of living in Wallingford.
Rohan has Cerebral Creatine Deficiency Syndrome, an extremely rare genetic disease that ultimately leads to low levels of adenosine triphosphate (ATP) which provides energy for all cellular processes. An informational video can be found here. Estimates of its incidence vary, but rarediseases.org estimates fewer than 100 cases worldwide. Laura described the ramifications:
In basic terms this means that creatine, which is mostly known as a sports supplement and is vital to energy production for all of us, does not reach Rohan’s muscles and brain as needed. This results in speech delays, intellectual disability, sometimes seizures, sometimes autistic features, sensory processing sensitivities, and quite a few other differences.
As with many rare diseases, funding for research and treatments is scarce, and it’s difficult to draw attention to a condition that affects so few. Laura has gotten personally involved:
Since Rohan’s diagnosis, I got really involved with our patient advocacy group, The Association for Creatine Deficiencies (I am the newest member of the board and the Director of Research), which has many moms like myself fighting for cures for the three cerebral creatine deficiencies … and for putting them on newborn screening tests.
Laura had heard of a Mom in Texas whose son also has creatine deficiency, and who raised money by working with a coffee roaster to create a special blend with portions of the proceeds to go to the fight against the syndrome. She saw similar possibilities in tea, and contacted our local tea expert, Friday Elliot. I interviewed Friday about a year ago when she opened Friday Afternoon Tea in a recently built space on Stone Way. Friday was eager to help. Writes Laura:
Lo and behold in a very short amount of time Friday put together Rohan’s Research Blend. In Friday’s words: “Using a combination of orange peel, blue cornflower, and chamomile this blend will inspire you to get creative with research on your own project. And, while you’re enjoying a cup, we encourage you to learn more about the ACD by visiting creatineinfo.org!” And impressively, for every ounce purchased $3 goes directly to the ACD towards research for creatine deficiency.
I contacted Friday who says that Rohan’s Blend is currently sold out, but she’ll be blending more in the next week. So head on over to Friday Afternoon Tea, buy Rohan’s Research Blend, and support the fight against Creatine Deficiency Syndrome.
And then have a Happy New Year!