Tag / Charcot-Marie-Tooth (CMT)

by Kilby

A Message from Robin Bickel

Last week Robin sent some news, following up with “…feel free to share my post with the group! I am so happy that CIDU continues to be a place where people can actually converse in a civilized manner. Sadly, that seems to be less and less the norm every day.“, and adding that she “…will be sure to share news with the group during the [coming] year.”

I’ve added some relevant links and footnotes to Robin’s message:

Hope this little note finds everyone well at CIDU land! The boys and I are doing well and as it’s already the end of November. (Where does the time go?)
I’m gearing up for holiday cards.† If anyone would like a card designed by the ever talented Zak, please drop me a line (even if you’ve gotten a card in years past).†
Aaron and Mary Cate hosted a bike-a-thon to raise money for the rare disease Charcot Marie Tooth (which Mary Cate has).‡ It was a huge success, and they’ll be doing it again next September. I’ll send out an e-mail next summer in case people would like to donate or participate. It was a lot of fun.
Zachary is still working hard making the business section of the NY Times all pretty. You can check out his Instagram at authenticzakbickel if you’d like to see his work.
Eight of us (including Aaron and Zak) went to Vienna for a week. Not only did we eat fabulous food, see amazing architecture and really great museums, we also saw the government apartment building where my father-in-law lived when he was a young child.
Happy Holidays everyone!

P.S. (†) – From last year’s holiday card reminder: send the e-mail to “robinbickel (at) gmail.com“, and put CIDU in the subject line. If you’d like, you can send Robin a card to 43 Peace Rd, Randolph, NJ 07869.

P.P.S. (‡) – The link goes to Bill’s most recent (2020) Walkathon post, in which Aaron gave some basic information about CMT and their fundraising. Please note that the link listed there for Mary Cate’s fundraising page is no longer in service.

by CIDU Bill

CMT: It’s Today [OT]

A final reminder that my son and his girlfriend are riding today to raise money and awareness for Charcot-Marie-Tooth, a rare degenerative neurological disease.

I promised I wouldn’t post the long version of this more than once, so it’s here

Next year, assuming the world returns to semi-normal, I’ll be joining them (though more likely on a walk than a ride). And let’s be honest, it’s more interesting when there’s a separate CIDU tally.

As always, thanks for your support both with CMT this year and with the March of Dimes Walkathon for the first twenty years of the century.

Mary Cate’s fundraising page

by CIDU Bill

CMT: You guys are awesome as always

Since the March of Dimes Walkathon isn’t happening this year (though as Chak reminded me, my 27-year streak isn’t affected if the event doesn’t take place), I was hoping to move our support over to Charcot-Marie-Tooth, a rare degenerative neurological disease with which my son’s girlfriend was. They’re doing a bike ride at the end of this month to raise awareness and money for research.

(I promised I wouldn’t post the long version of this more than once, so it’s here)

Almost immediately, support started coming in from CIDU visitors, and we’re all very grateful.

(Disclaimer: We are not donating money for Mary Cate’s ride: our son is part of the same team, of course, and nobody’s visiting his page: it’s just sitting there like Charlie Brown’s Christmas tree, and it’s really sad)

A couple of people have reported having trouble making donations online. Please let me know if you do, and maybe I can help.

Mary Cate’s fundraising page

by CIDU Bill

Whither the Walkathon?

I’ve been doing the March of Dimes walk since 1993, and hopefully I’ll begin another 27-year streak next year, but… it’s canceled for this year and I’m not sure I’ll even get into Manhattan to do the “improvised” walk I did the past couple of years.

(Getting there means spending 2 hours in a too-crowded train, and I want to be around to start my new 27-year streak next year)

But…

My son and his girlfriend are doing a bike trip for Charcot-Marie-Tooth at the end of this month. Since CIDU won’t be raising money for MoD this year, I was hoping we could shift some of our support over to CMT.

(I actually had elaborate plans to do walks for both MoD and CMT on the same day, but then 2020 happened)

Since my son’s an engineer working for a pharmaceutical company, I’ll let him explain further (and don’t worry, this will be the first and last time I post the full version)

As you may be aware, my girlfriend Mary Cate was born with Charcot-Marie-Tooth, a rare degenerative neurological disease with no treatment or cure. For the past three years, we have participated in Cycle 4 CMT, a ride in Vermont that raises funds for CMT research. Cycle 4 CMT is one of the largest CMT fundraising events in the world and has raised over $1,000,000 in six years. This is a really exciting time for CMT research: CMT is a genetic disease caused by a single mutation, and brand-new therapeutic models such as gene therapy and antisense oligomers have been proven successful in other diseases of this type. It may not be very difficult to transfer these approaches to CMT.

But CMT is a rare disease, and Mary Cate’s type, CMT4C, is even rarer. Thus, for-profit companies are unlikely to get involved until some of the costly early-stage work is done, and that’s where your donations come in! The CMT Association is actively funding an exploratory gene therapy for CMT4C developed by Dr. Kleopas Kleopa in Cyprus, which could eventually become commercialized.

This is a difficult year for everyone. The official in-person event is canceled this year in favor of a virtual event, but we are still going to Vermont with friends to do a ride and raise money and awareness. There are many worthy causes to donate to this year, and there’s less money to go around, but we ask that if you do have something to spare after maxing out your campaign contributions, please consider donating to our virtual ride! Fundraising will be a real struggle this year since the in-person events are all canceled, so your donation will make a big difference.

[Edit: Unfortunately, the link to Mary Cate’s fundraising page is no longer in service.]

Thanks!