From undiagnosed to climbing Mt. Everest!

[annekat]

Me, too, Cindy.... your stamina and perseverance are indeed inspiring, and you are a true sportswoman and courageous soul flying in the face of Wegs. This makes me think, gee, I could at least get out and walk a half an hour or more a day, if you can do what you do. More power to you, there is no reason why you can't finish the race this time, and heck, you might even win!

[Cindy]

Wow! I can't believe it has been almost 3 years since my last post - but I have been busy working to raise rare disease awareness on a larger scale!

Quick update: I finished the 1000-mile Alaskan Iditarod Sled Dog Race on March 22, 2015. I am now the only female to have summited Mt Everest (age 51) and completed the Iditarod (age 56) (3 men have done both, but they didn't have a rare disease). The NORD banner I held on the summit of Everest, I held under the burled arch at the finish line in Nome. In May 2015, NORD (National Organization for Rare Disorders) flew us to Washington DC and honored me with the 1st ever Rare Disease Public Awareness Award for my work in spreading to word.

NORD Award - smaller.jpg

After my book https://www.amazon.com/Reaching-Beyo...ct_top?ie=UTF8 was published in 2011, I had to do something even bigger to reach a larger audience. So my husband and I produced a feature-length documentary of my journey called BANNER ON THE MOON Banner on the Moon! It was released a few months ago. The book has more detail on my 14-year battle to get diagnosed. The film focuses more on raising rare disease awareness and the importance of living life. Neither the book or the film were made to educate people specifically about WG/GPA. Instead they are intended to share my journey and to tell people who get the "I don't know what's wrong with you" from their doctors the importance of contacting NORD to get connected with what I call "the I don't know doctors" to help get them diagnosed.


And, I am signed up to run in the 2017 Iditarod on March 4th - I just love those dogs!!

Banner On the Moon Poster - very small.jpg

[Alias]

Hi Cindy, I live in Anchorage; I'll watch for you at the ceremonial start next March! Congrats on your very inspiring story and your achievements.

[drz]

The Banner on the Moon worked for me--Wow it looks like a great video.

I got invalid attachment for other links. do they work for others?

As usual hats off to Cindy for her amazing achievements and indomitable spirit. Our real hero! Keep going girl!!

[Cindy]

Hi drz. Maybe the files are too large. I will replace later when my computer is done with its back-up. Did you watch the film trailer?

[Cindy]

Hi Tom, Make sure to come by my team for a photo and a hug. That is if you are into that stuff

[mishb]

Awesome, awesome and awesome Cindy

My mum has just returned back to Australia after holidaying in Canada and Alaska for the past 5 weeks.
They visited the Iditerod headquarters and got to cuddle some puppies.

I told her to keep her eyes open for you since you have now moved up there, (she has read the book and seen the film), but of course Alaska is a big place, so it wasn't to be

[Cindy]

All is quite on the Weggie Front. Had my checks a few days ago and all is quite This is great news as I am moving to Alaska and the doctors there are not as . . . so I will be flying back and forth to my UCLA docs as needed.

[Pete]

Here's hoping you finish ahead of the red lantern this year!!!

[Alias]

The film trailer is great - very inspiring. On the other hand, it makes me feel like a major sloth, since I think walking a couple miles a day is a major achievement! Wishing you lots of success with the film and crossing my fingers for good race conditions in March.