Author Topic: Stop NF2  (Read 6711 times)

leapyrtwins

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Stop NF2
« on: August 21, 2010, 08:01:21 am »
I received this email from Rebecca Dufek an NF2 patient.

I believe I became aware of Rebecca through this Forum; please send prayers her way.  She is anxious to reach her goal to getting to the summit of Kilmanjaro on 10/10/10 and on her way raise awareness and funds for NF2.

Rebecca has already reached the summit of Mt. Rainier.  She's truly an inspiration.

Jan


10-10-10 Kilimanjaro 
 
Dear Jan,

This morning I was asked "What is your greatest Christmas wish?"

My immediate response:
 
Above the clouds with fellow cancer survivors on Mt. Pilichuk  My Christmas Prayer and Wish My greatest Christmas wish/prayer I am asking for early:

Most important is that I hope my entire Kilimanjaro team has a safe climb as well as safe travel to and from the United States. They are all pretty dear to my heart and wonderfully supportive to our cause and getting the word out there about NF awareness. My wish is that nobody succumbs to life threatening altitude sickness or pulmonary edema which can happen at high altitude. Further, I hope nobody contracts any travel sicknesses such as dysentery and malaria.

The health and safety of everyone is the #1 priority!

Wrapped up in that wish is the desire for all of us to summit "The Roof of Africa" this October and to reach our fundraising goal of $10,000.
 
Why is that important to me?

I want to make you all proud, inspire others around the world to keep believing, to keep striving, and I want to do all those who suffer from NF and cancer justice by doing my best and making a movie that will bring awareness to the world.

Climbing Kilimanjaro for NF2 was a dream that ignited in my mind 10 years ago. Then tumors grew, crushing my brainstem and robbing me of vestibular function. I was at complete devastation and after a year feared I may never hike again let alone scale up Kilimanjaro. This will be the most awesome Christmas wish ever for me! I pray that all will go well for this trek!

We would greatly appreciate your support

Please add us to your prayer chains - pray for us even if you are not spiritual! I believe in a higher power, and that is all that matters. The greater the energy, the greater the power to get us UP mountains!

Please make a donation of what you can afford.

http://helpstopnf2.org/donate/

Please share this email with others which will help widen our circle of prayer/positive energy and also help us to reach more donors.
 
As always, thank you for your encouragement and concern!

Sincerely,
 
Rebecca Dufek
Help Stop NF2 Foundation
Charity Athlete
Cancer Survivor
Brain Tumor Survivor of NF2
 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

6pick

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Re: Stop NF2
« Reply #1 on: October 09, 2010, 10:21:33 pm »
So, how's Rebecca? Tomorrow is 10/10/10. I hope she's ready to top it!
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Jim Scott

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Re: Stop NF2
« Reply #2 on: October 10, 2010, 01:46:36 pm »
Jan ~

Thanks for passing on Rebecca's message regarding her attempt to climb Mount Kilmanjaro in Tanzaina to raise money for NF2 awareness and research funds.  I understand that Mount Kilmanjaro is a fairly tough climb although it apparently looks easy.  "Easy' being a relative term in this case as the mountain is 19,000 feet high, which makes me tired just thinking about climbing it. 

Of course, I wish Rebecca well and look forward to reading about her attempt, which I hope is both safe and successful.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Stop NF2
« Reply #3 on: November 13, 2010, 07:27:50 pm »
Just received this email message from Rebecca today:

"Hello Friends!
 
Now that we are back from Africa and settled, I have begun to post journal entries and photos from the Kilimanjaro expedition. We had an amazing time and fabulous team all climbing for the common goal of bringing hope to the world and awareness of Neurofibromatosis, cancer and brain tumors.
 

To get brief sneak peaks of the adventure, visit my blog the NF2 Odyssey at www.diverbeck.blogspot.com. Keep checking in as I will continue to post daily some photos and/or a journal entry."

Very interesting reading. 

I didn't realize that Rebecca is an NF Charity Endurance Athlete, an NF2 brain and spinal tumor survivor, a Hodgkin's Lymphoma cancer survivor, and has been designated by Gold's Gym International as a Most Inspirational Finalist.

It never ceases to amaze me the incredible people I've "met" because I was diagnosed with an Acoustic Neuroma.

Jan


 
 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Lizard

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Re: Stop NF2
« Reply #4 on: November 14, 2010, 04:25:33 pm »
Wow thank you for sharing, she an a truly inspiring woman!
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

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