Sunday, August 9, 2009

Week 1

The first week of our new meal plan (and my consequent weight loss and fundraising) is drawing to a close and we have done pretty well I think. Lots of salads, lean chicken, eating breakfast daily and taking smaller portions all around, it hasn't been as difficult to adjust to it as I expected. It helps that Sarah has taken so fondly to the book we're following and is an excellent cook. I did allow myself a few beer and a few wings on Friday so as not to deny myself the little things that make Friday's stand-out from the rest of the week. People have said (and I agree) that the "denying" method of habit-changing often ends in failure. I've failed many times with the cold-tuyrkey approach (smoking, namely) and don't intend to slip from my goal of slimming down. I'm feeling good about it and am down 4 lbs. from last Monday.

I haven't introduced any new cardio exercise aside from a few extra long walks with Sarah and Libby, but I have picked up the daily sit-up and dumbell routine to keep myself from thinking about food in the evening. It works. I am waiting until my body has gotten used to the newer, fewer calories I'm giving myself before I start burning them in new and exciting ways.

Thanks to a few more people for their encouragement:

Georgina Keinick has pledged $1/lb, so has Amanda Fullerton. Thank you both! And thanks to those that have already pledged. I am very grateful for your support.

This brings the new total up to $10.50 per pound toward my weight loss goal of 30 lbs. I'm giving myself until December to do it. With 4 down, this leaves 26 to go. I'm bound to fluctuate a bit, but I'll be honest here and share the ups and downs openly. I don't anticipate this to get easier as there's sure to be more days at the cottage ahead where turning down second and third burgers is bound to be heart-wrenching.

I did receive some more information on where the money that the Choroideremia Research Fundation Canada Inc goees. Choroideremia is a rare condition so there isn't a great deal of awareness and thus a lot of need for money to finance research undertaken by scientists throughout the world. Bob Hillier of the CRFC writes:

"The CRFC funded a 1-yr ptoject of Dr. Miguel Seabra at Imperial College in London [last year]. There is a bit of information about his project on the website but basically he is developing a non-viral choroideremia vector that could be used for gene therapy. He is just winding up the first year of the project and we are currently waiting for his final report. He presented some of his results at the recent ARVO conference. (AVRO stands for the Association for Research in Vision and Opthamology). He did apply for a second year of funding but we directed the money elsewhere (see below). The Seabra project was for $60,000.
In February the CRFC received a number of new grant requests and has awarded 75,000 to Dr. Ian MacDonald at the University of Alberta in Edmonton to fund a one year project. The project has three aims that I will detail in another e-mail. The project starts in September a nd only a few people know about it so far. It will soon be up on our website. Dr. MacDonald hopes to have a gene therapy clinical trial going within five years."

Thanks Bob.

As you might imagine, things like "clinical trials" are huge news given the population of people who live with choroideremia have been told from diagnosis that there is no known cure, and thus no treatment to prevent "inevitable" blindness. With help from people like you, clinical trials happen, treatments become something that exist, and withthat comes hope for many. I can tell you from experience that "no known cure" is pretty disheartening. The more these scientists learn about the "choroideremia gene" the sooner this phrase won't be definitive.

I have posted a note about this fundraising effort to a choroideremia listserve populated by people with choroideremia and should any "CHM'ers" be reading this, I invite you to comment on my blog.

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