The Scoop

hi everyone, and happy holidays!

Dec 21 has come and gone, and as of that date I shed a total of 20lbs. I shrunk from 205 to 185 lbs through a combination of portion control, cutting down on certain foods altogether, and exercise. I hoped to reach 30 lbs but this is the first time I've actually tried to LOSE weight so I'm pretty pleased with the results. I feel better and am motivated to continue on with a healthier lifestyle.

Recently I have experienced a minor change in my vision, a slight worsening that frightened me a bit given that there's no rhyme or pattern or pace that the degeneration occurs. The change came as another small patch of obstructed vision in my "good" eye, encroaching a bit into the clear field of central vision in the right eye that I rely upon to see. I am still getting around well enough without a cane, am reading this now clearly from a comfortable distance, etc. This reminded me of the importance of researching a cure.

I am hoping you will all honour your pledges despite my not achieving my "goal," as the real goal of this was to raise 1) awareness of Choroideremia and 2) a little money to support research into a cure. Currently there is no cure and the CRF and CRF Canada put 95% of every cent they raise toward research. (Source: http://bit.ly/7F4Bsn) Every little bit helps.

Your support in the amount of $48/lb in pledges has amounted to $960. Awesome. Again, thank you all.

So, donating. It's easy and can be done online. There's even a few hours left if you wanted to donate this year and benefit from the tax credit you will be issued. Please visit this website for instructions on donating. Using Pay Pal is quick and easy and can be done using a credit card. Alternatively, cheques are acceptable and can be sent directly to the CRF Canada Inc.

For instructions on how to donate, please visit:
http://www.choroideremia.ca/Donate.aspx


Thank you all again for your generosity.

Sincerely,
Jeff, Sarah and Libby

Still losing

Just to ensure you all that I haven't slipped too far, I have still managed to lose 18 lbs since I began this. A little over a month remains until I reach my original completion date, Dec. 21.

November already

Following my last post I've received pledges from Susan Shephard ($2/lb) and Miriam Murray ($1/lb) both of whom responded after the PSC newsletter. Thank you to both of them! The running support stands at $47.83/lb, while I'm still hovering at 15 lbs lost.

I have been in and out of the gym a few times and out for some good walks since my last post but not nearly enough to balance the slips of not following he Ultimate Healthy Eating Plan as we had been so good at doing. I haven't been feeling 100% lately fighting seasonal cold and flu. Waking up tired and falling asleep early in the night hasn't helped me shed any pounds. Since Halloween we've been tending to a sick little girl and quick and easy suppers have replaced the smart meals. Excuses, excuses, I know. Given that I have less than two months to lose the remaining 15 lbs to meet my goal I have to get serious.

Update

A colleague recently asked if I was interested in submitting a short article to a newsletter that is distributed throughout the Public Service to employees of the provincial government. I took Tony up on it and wrote a short blurb describing this weight loss/fundraising scheme and it ran yesterday in "@ The Window."

I've been neglectful, not posting updates as frequently as I thought I should have been. In my last post (almost a month ago now!) I was down 15 lbs from my starting weight of 205 lbs. Since that time I wavered a bit, fell off the eating plan while away from home, slacked off at the gym and gained a few pounds back. But I've gotten back on track, shed those pounds and am holding steady at 15 lbs lost (people say you reach a plateau where it's no longer "easy," I think I am there). I'm aiming to get on the elliptical machine nightly to see if I can't push through and make it to 20 lbs by the end of the month. To anyone that's come upon this blog via the @ The Window article, thanks for your interest. This has been a great couple of months that have shown me it's not impossible to adopt healthier habits. This fundraising model isn't something that is terribly difficult to enact. If you have a cause that is near to you and would like to lose a few pounds, try it. I'd love to know if it works for others too. If you wish to pledge support for the Choroideremia Research Foundation research grants, please post in the comments below (include your name!) and stay tuned.

Busy!

The past few weeks have felt like the most hectic in a long time. Sarah's started back to school, I had a bizarre bout of something, Libby's been teething and rangy and not sleeping well, work has been busy, and the weekends have seen many visitors (who we enjoy). While I haven't had time to post even a short update to the blog I have continued to lose weight, clocking in now at 15 lbs lost and holding in just over a month. From 205 to 190 lbs, so far so good. I might have come upon a plateau, so a few people have said, but I'll continue with the exercise and see what happens. We're still eating well, watching our portions - with the odd slip-up, extra slice of pizza or bottle of beer/glass of wine. I know my weaknesses. I am trying to get at least 20 minutes on a near-by eliptical machine in every day, which, coupled with my walking/ferry/walking/ferry commute and neighborhood pond/harbourfront/lake strollling, amounts to a good start at cardiovascular fitness. I'd like to aim for a full half-hour on the "machine" with my ipod and a good PRI/NPR/CBC or How Stuff Works podcast or audiobook. I've also been using some dumbells to shape up in our apartment in the evenings, 30-50 reps for my arms, shoulders and obliques, some sit-ups on a pilates ball (much easier than the lying down sort!), all leave me feeling it a few days later, stiff and burning, a nice reminder that a little work will make a difference. Thanks to Ann "Nanny"Chaisson for her recent $1/lb pledge, to Janet Smith for her $1/lb, and to CNS co-worker Patricia Jreige for her $1/lb committment. Their contributions brings the total so far to $44.83/lb. I'm only a month into this so I'm hoping there's still hope of surpassing the $50/lb mark. Thanks to everyone that has contributed.

In unrelated, sad news, a dear old friend died this week. Marie MacInnis, 75, of Antigonish died Wednesday night. She will be missed. Her obituary is posted online.

Down 9

Hi all, I apologize for being neglectful here. I took a few days last week while the weather was nice and went offline to the cottage at Cribbon's Point in Antigonish. We had a great time, had Libby in the water multiple times daily, sat in the sun too long, drank some light beer and ate bar-b-que. This four-day sojourn didn't fit within the eating-healthy-plan, but guided by a new-found portion control mechanism we all managed to enjoy the treats, but not over-enjoy them. Since I began this weight-loss mission I have managed to shed 9 lbs. I am down from my beginning weight of 205 lbs to 196 lbs. I'm pleased with this and am encouraged by the continuing flow of pledges from people that have learned of my fundraising effort via friends, family or Facebook. Thanks to:

- Carly, John and Callum Sutherland for $1/lb pledge
- cousin Justine MacMillan for $1/lb
- Nelda Armour for $1/lb
- cousin Tamara (nee Overmars) and her husband Dave Statchcook for $1/lb
- Michelle Lucas for $2/lb
- Iain MacInnes & Jodi Hartery for their generous $3/lb
- Dr. Ann Hoskin-Mott for a generous pledge of $5/lb (Dr. H-M is a local eye specialist I see who specializes in congenital eye conditions like CHM)

This is incredible. In just over a week $14/lb has been added to my previous total of $27.83/lb bringing the running total up to $41.83/lb! At this rate we have together raised $376.47 for choroideremia research. If I reach my goal without any additional pledges the total raised would be $1254.90! Thank you all so much. I will continue to keep you updated on my progress.

So far, in addition to eating well, controlling portions, eating breakfast and not skipping meals, I have been lifting weights in the evening - no benchpresses yet, only dumbbells - and doing sit-ups on an exercise/palates ball. I'm feeling good and am glad that a few pounds have come off to encourage me to continue. With your help and support, motivating me to work harder, I think I'm well on my way to meeting my goal of shedding 30 lbs. by December 21. This week I plan to don my nearly-fresh-out-of-the-box-despite-being-4-years-old running shoes Sarah bought me while we lived in Toronto and start doing laps around nearby Sullivan's Pond in Dartmouth. Hopefully this will lead to my being able to comfortably manage the distance around Lake Banook, a 5 k loop from my door. I'll let you know how that goes.

The Book

So, I mentioned 'the book.' This book that we've been following to made the transition from just eating to eating well is The Ultimate HEALTHY EATING Plan (that still leaves room for chocolate). It doesn't require any drastic exclusions or extreme measures but offers great meals that are pretty simple to make, using ingredients that are easily picked up locally. There's seasonal plans that take into account the availability of fresh produce, and a plan for particularly busy times or for days where you're away from home on the move. It's full of common sense nutrition and stresses portion sizes and regular meals. Because of it I've been eating breakfast daily and loving it. This alone has been an incredible change and I've been feeling great.

Since my last post I've had a lot of luck with good people coming forth and pledging to support CRFC through this weight loss fundraising effort. Big thanks to:

My sister Emily -> $1/lb
Ben Chaisson & Beth Kates -> $3.33/lb

past-roomate, lovely Torontonian (and nutritionist!) Julia King -> $1/lb

Bev & Dave Renny -> $2/lb - interestingly enough, Bev (a not-so-distant relative) carrie the CHM gene and her son Pat (Paddy) has choroideremia. Naturally, they understand the importance of researching towards a cure. Thanks for your support you two!

Eleanor & Gary (I'm afraid I'll need some help with the last name here) -> $2/lb

So $9.33/lb of pledges over the past couple of days! Add that to the previous total of $18.50/lb and - wow! - $27.83/lb!! This is fantastic. I'll be sure to weigh in again soon and report back. Steady at 199 lb.

Oh, and I do intend (once I find the cord for my digital camera) to begin posting pictures of the great suppers we've been having. I should also start keeping better track of the exercise I'm doing so to ensure I continue to push myself, increasing as I go and continue to shed these pound.

Thanks again everyone for your generous support. It's nice to hear from you, too.

A few more pledges

The help of friends promoting my weight loss/fund-raising endeavor has generated the first pledge from someone I don't know personally. This is a great benefit of having some great friends. Thanks Meghan Ackerman for sharing, and thank you Shannon George for your pledge of $1/lb. Check out Shannon George Photography at shannongeorgephotography.com where you can see some photos Shannon has taken from her home in Yellowknife, NWT.

Those of you who are on facebook, please take moment to post a link to this blog. Likewise, emailing the link to friends you think may be interested in supporting me could also generate some pledges. Promotion and word-of-mouth will help raise the bar and result in a larger sum being donated to the Choroideremia Research Foundation Canada Inc. in December.

A big thanks to Tony Kiritsis for his generous pledge of $3/lb. Thanks as well to Laura Gay for her $1/lb pledge, and to Erin MacDonald for her $1/lb pledge. These latest pledges bringtoday's total to $18.50/lb. Given that I have shed 6 lbs. so far (down to 199 from 205 lbs last Monday), the total earned donation amounts to $111. Thank you everyone for your support. This is such a fantastic way to stay focused and motivated. More to come.

Moving on up...

Thanks to Matt Riley-MacPherson and Meghan Ackerman for their $1/lb pledges. This brings total pledges to $12.50/lb!

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.

Day 3

Wow, only a few days in and the words getting out that I've given up donuts in favor of your dough. All for a good cause mind you. Every cent raised will go directly to the Choroideremia Research Foundation Canada Inc., a non-profit that supports research towards a cure for choroideremia in the form of grants up to $75,000. I will provide some details on the projects currently being supported by the foundation as time goes on but for now I'd like to thank the generous folks who've committed pledges:

Fiona Gibb -> $1/lb
Barb Overmars -> $2/lb
Geoff Kerson -> $1/lb
Alison & Janko Sampson -> $2/lb

Lindsay Overmars -> $1.50/lb

Karen (M.I.L.) Chaisson -> $1/lb

So, $8.50/lb is a great start! At this rate I will raise $255 when I reach my goal of shedding 30 lbs. Should I exceed this by December 21, we'll have to weigh and see. Get it? Weigh. Oh man.

More later. Weight updates and all. Thank you everyone.

Inspired

So Sarah and I kicked off a diet recently to slim down and motivate ourselves to get fit. We're feeling frumpy and lazy and it's contributing to a general blahness about the house that we're both eager to kick. This state came upon us both slowly. We've had our hands full with our 8 month old baby girl (Libby) and with the general hectic-ness that is raising an infant, we've neglected ourselves some. We can't blame Libby though. For years now, as I approached and eventually passed the 30-year mark I'd noticed a bulk developing that hadn't previously bothered me much. Lately though my shirts no longer fit right and my pants have grown too tight. I live a less than active lifestyle and still eat and drink like a twenty-year-old. So with some help from a healthy eating plan book and a commitment to exercising more than ever before, I intend to scale back my expanding girth and retreat from this bulky 205 lbs. Sarah is keen to scratch 10 lbs off her petite frame and she has more experience running and marathon training than I have so this shouldn't be impossible for her. I however have historically suffered from an inability to commit to any lasting lifestyle changes. I need some motivation, some inspiration, a commitment, a cause. Coincidentally, I have stumbled upon a blog that has inspired me. And I'm setting out here to duplicate it, well, to follow the authors lead.

The cause: I have a degenerative eye condition called Choroideremia (CHM for short). It's hereditary and worsens over time. While I could see well as a teenager, I am now functionally blind in one eye and partially sighted in the other. My night vision has always been poor and has gotten progressively worse. The decline has come in small increments, imperceptible almost, but as time passes the area of my eye with which I see shrinks. To quote EJ (who you will meet in a moment) "imagine living life looking through a straw." It's a lot like that. I share this condition with a brother (Jonathan) and my grandfather on my mother's side (Clarence). Eventually I will lose the little sight I have currently and have to start using a cane and all that jazz. And, I just so happen to share this condition with...

The blogger: EJ Scott is a Chicagoan who has been blogging about his fundraising effort at "Losing Weight for Charity and Myself!" EJ is raising money for the Choroideremia Research Foundation (USA) a non-profit American outfit that raises and distributes funds towards finding a cure for the yet-incurable condition we have in common. He has been taking pledges in a per pound fashion and is now up to $79.95/lb. This means for every pound of weight EJ sheds, $79.95 will be raised to finance research. So far he's lost 15.4 lbs. That brings his fundraising total-so-far to $1231.23. This is no paltry sum considering that individual pledges range from $0.50 upwards, $1/lb, $2/lb, $10/lb. His goal is to lose 60 lbs in one year. If he gains no further pledges this would put funds raised at almost $5000 by the time he reaches his goal. Chances are he'll wrangle a few more dollars per pound and top that.

Imitation - the sincerest form of flattery: Well, I don't know if this is true. I've yet to learn how EJ feels about my plan. I think others have already mimicked him. I'm jumping on board his fat-shedding bandwagon and looking for support from you - my friends and family, my family's friends, my friends' families, and whomever else. As EJ's set it up, donations are tax-deductible and receipts are issued. Given that we reside in Canada I propose that every dollar raised go to the Canadian equivalent of the American organization, The Choroideremia Research Foundation Canada Inc. where the same can be arranged. Here in Canada, money collected goes to doctors/scientists that are working on a cure. It may not help me, but perhaps this research will benefit Libby's children.

Day 1: The diet technically started yesterday, but today I came upon EJ's blog and decided to blog about my own efforts to lose weight for the cause. I'd like to follow the same method as EJ and seek donations per pound of weight lost. Currently I weigh 205 lbs and I intend to lose 30 lbs, taking me down to 175 lbs, my last remembered healthy weight. I am giving myself until December 21st to get there. Why December 21st? Just in time for Christmas, an excellent time for giving. Plus, I don't think I could stand to skip a Christmas Dinner with all the trimmings. So, send me your pledges. I'll post all pledges here and track my progress, pledges, highs and lows of losing weight here for all of you to read. Once completed I'll ask you to contribute your pledge to CHM Research Foundation Canada online. Your receipts will be mailed out and you will have contributed to finding a cure for this condition. Any support would be greatly appreciated.