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What a Conference!

8-4-06

 

Start: Redstone, CO

Destination: Redstone, CO

Elevation: 7200 ft.

Miles: 0.0

Weather: Stormy (in Nashville)

 

First, thank you. Thank you to my journal readers. My fellow patients, whether it's AA, MDS, or PNH. To other patients of any terminal illness. Survivors. Families and friends of patients and survivors. Those that attended this year's patient and family conference - thank you for the inspiration-hope-octane "fuel" that we need to push us the rest of our way to CA. Thank you to the doctors, nurses and experts that answered our questions and help patients every day. Thank you to the AA&MDSIF board - and staff. Thank you friends and family back home, supporting us with every ounce of your being. Thank you all for the prayers and thoughts. Thank you to our major sponsors that signed on from the beginning - 4imprint and Celgene. Thank you, Pharmion, for your huge support along our way. Thank you Brenda, Jennifer, and Dick for sending press releases. Thank you to the media that picked up on us and told our story. Thank you to all the new friends we've met along the way. And thank you to anyone I may have forgotten. If I could list every single person individually for what they've done to help us, I'd be making a never-ending list. So thank you everyone! I really have a hard time making the words "thank you" mean what I feel. So this is the best I can do. My heart aches at the frustrating thought of never being able to truly express it. You have not only all become our support team, you've become our friend, and part of our family. So, thank you.

 

Even if you aren't directly related to a bone marrow disease, you should attend one of these conferences sometime. The stories people have are unreal. They are stories of battles, triumph, loss, love, hope, inspiration... and so much more.

 

This is what we're fighting for. We are going to be the first mother-daughter team to cross the country on foot, hiking and backpacking. We will have hiked nearly 5,000 miles for a cause that needs great attention. We need more research, more inspiration, more hope, more education, and most importantly, more lives saved. We will never quit.

 

I have been quite timid about the money-raising aspect, and I really don't know why. I shouldn't be - we're hiking hard for it! And one thing that will help us out - and I promised Jennifer I'd say this - if everyone reading this quickly sends an email or a letter to Oprah, David Letterman, CNN - whoever you so choose - about us, maybe we'll have a chance to reach our goal. We may not fight a lot, or have some terrible catastrophe happen, and we don't have criminal records that can be dug up, or anything else negative to spark controversy. What we do have is a positive outlook, a support team (you), and dedication. Now if these aren't grounds for a national story... And with a national story, we hope someone will see our dedication and help financially.

 

I have a hard time asking for help sometimes. Well, a lot of the time. I think it's the stubborness in me. I feel as though I can do everything on my own. The bare truth is I can't. I didn't beat AA alone. And I haven't done this hike alone. So it makes sense that just my footsteps alone aren't going to do it. They need your help. Let's pull together and let the world know about these diseases and make a difference!

posted on Thursday, August 10, 2006 3:12 PM

Feedback

# re: What a Conference! 8/10/2006 4:16 PM Kristi

Hi Ladies. I'm glad to hear that you had a great time at the conference. I just wanted you to know I just submitted a request to the Oprah Show. For anyone else intersted it was very easy, go to Oprah.com, click on the "tell us your story" link, then choose "share your show idea". I'm glad to be able to do a very small drop in the ocean of your effort. My prayers go out to you all and your cause.

# re: What a Conference! 8/10/2006 5:12 PM Jakob Teitelbaum

Hi guys, we're in Dodge City. Sort of a sketchy town (though could we really expect otherwise?)

Anyway, I just wanted to mention that Tamar and I, while walking on some dusty road, decided that the least we could do for you guys would be to try and get you onto Oprah. After all, it's sort of unusual for cross-country hikers to recommend OTHER cross-country hikers as a story! But, when we tried, there was only this big form where we had to provide background and stuff, and we didn't know it well enough.

Still, if you can suggest any particular news organs you want us to call for you, feel free - I mean, we're just walking all day (as you know so very, very well) and so we'd be glad to help out in any way we can.

Keep up the great work, guys - we're both amazed by your perseverence on this trip in every way. Hope we get to meet someday. :)

-Jakob

# re: What a Conference! 8/11/2006 7:53 AM Jennifer

Adda girl!! I knew you could ask! I am so proud of you! Everyone reading this - thank you for asking Oprah, GMA, GMA Weekend (that's a good one), Today Show, CNN - whomever you wish...have them get in touch with me as the AA&MDSIF contact (800-747-2820 - Jennifer Krammes, Director) and I'll take care of the logistics and get them all the disease info, Our Hike info, etc - not a problem! And, by the way, yes - we know Oprah is on hiatus, but that doesn't mean her staff is...email her once a week...get everyone and anyone you know to do this, too...make sure they can't ignore us...we can be persistent...we KNOW Our Hike is a WORTHY CAUSE and that Robin's story needs to be told for all the other patients and their families who are out there with this disease! Thank you - everyone.

# re: What a Conference! 8/11/2006 8:59 AM Shopping Buddy

Sounds like the conference went pretty well. Good luck and God speed on the rest of the hike. Keep putting one foot in front of the other.

# re: What a Conference! 8/11/2006 11:08 AM Carolyn Haidvogl

It sounds like you had a very uplifting conference and are pretty fueled up for the last 3 states. We are all behind you 100% and give you so much credit for what you are doing. I also submitted a request to the Oprah show (which was very easy). Hopefully if alot of people do this it will be considered. I don't know why it wouldn't be because it is such an amazing and heartfelt story. Good luck ladies and my thoughts and prayers will be with you for a safe walk!!!

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