Discover a small company with a big attitude for service and quality.
 

 

Sarcoma Charity Bike Ride in Denmark-July 2006

Click to Enlarge

Buks family cyclists (l to r) Deborah, Eric, Joseph and Isaac, set out for a Chappell Hill, Texas training ride in preparation for their Team Sarcoma 2006 ride through Denmark the first week of July.  They'll wear buttons in memory of Jimmy, Fran, and Shanna and in honor of Dusty and Rose.

Donate Here:  The Liddy Shriver Sarcoma Initiative 

The Liddy Shriver Sarcoma Home Page

Dear Web Site Visitor,

Thought you’d get a kick seeing me represent Texas as a Sarcoma survivor in an international bike ride! 

When I was diagnosed with this rare disease, I confess I did the usual ritual.  I begged and bargained with God that if he’d just let me live to raise my children, I’d use my life for good - especially to help others among the 10,000 newly diagnosed with this aggressive connective tissue cancer every year.

Well God certainly did His part, and here I am, healthy and thriving, and a member of an even rarer group – the survivors.

And I’ve been working hard to do my part too.  I serve on the boards of two non-profits created in just the last four years, SARC and Sarcoma Foundation of America. 

SARC was created by the handful of Sarcoma specialists (mine included) around the world to create collaboration among cancer hospitals so pharmaceuticals will have the infrastructure they need to conduct clinical trials.  Before a couple of very recent developments, Sarcoma treatment has been the same for 30 years. Today, not only are Sarcoma patients seeing clinical trials underway (they’re a very willing population given their limited options), but SARC is gaining a reputation in the oncology community as a model for future drug development and pharmaceuticals are actually requesting SARC as their choice for new drug protocols.

Sarcoma Foundation of America concentrates its efforts on legislative issues, such as the creation of a proposed rare cancer act to overcome the legal barriers that prevent FDA acceptance of trial data without minimum numbers of participants ¾ an insurmountable hurdle for our small numbers.  And ironically, though at first glance Sarcoma patients don’t appear to be economically attractive as a target population, we are proving to drug developers that compounds that show promise against this most difficult–to-treat cancer can be tested with relatively high enrollment rates and if they work on Sarcoma, they may have tremendous profit potential in breast or colon cancer.  Additionally, SFA has been tremendously effective at awarding research grants to clinical investigators who now know about Sarcoma and are lining up to test their cause and cure theories on this vascular disease.  These are extraordinary breakthroughs in a short time.

My part, as you probably surmised, is communications support as well as providing a business owner perspective to operational issues of both non-profits.  Outside of these two groups’ work, I have been able to, with Eric’s support,

	provide temporary housing to MD Anderson patients in our home;
	fund all our own expenses to be part of the international bike ride, Team Sarcoma 2006, to raise awareness and research dollars;
	offer peer support to newly diagnosed and their caregivers who’ve been displaced from their homes far from Houston;
	participate online to provide knowledge and advice to patients to help them source second-opinion travel funding (getting to one of the five Sarcoma specialists in the US is essential to survival as most oncologists will never see or treat the disease in their entire careers), navigate the insurance companies and learn what pain meds to request for the debilitating side effects;
	create a poster series of Sarcoma survivors for the MD Anderson Sarcoma Center to give patients hope and the awareness that though they never heard of or met anyone with this disease before, they are not alone;
	underwrite SARC’s first year of office space and utilities to help the growing organization as it evolves from a concept to the powerful influencer it’s become. (No, our back patio still hasn’t been tiled, nor the master bedroom decorated, but these things won’t save someone’s life, so they’ll wait.);
	help facilitate the first-ever summit of 17 Sarcoma advocacy groups that have sprung up in the US over the past decade, in an effort to organize our community;
	publicize grassroots fundraisers and write/place articles on Sarcoma advocacy;
	and now start work on SARC’s website.

I tell you all this because I never ask anyone to do something I’m not doing whole-heartedly myself.  But one lesson I learned from this cancer journey (and it’s still a hard one for me, admittedly) is that in life we all have to be able to ask for and receive help from others.  (So many of you were there to drive me to chemo, take care of my children, keep my business thriving, bring food, send notes of encouragement, and on and on, and I am forever indebted to you.)

And yes, I’m now asking for your help to raise $25,000 via Team Sarcoma 2006, organized by the Liddy Shriver Sarcoma Initiative, a non-profit Bruce and Bev Shriver created in memory of their beautiful daughter.  They produce an online newsletter that keeps the Sarcoma community educated and aware and provides a vital link to our ability to organize ourselves from such distant locations.  And very important, they are one of the most effective Sarcoma fundraising groups in the country.  That’s why I asked Bruce to channel one of his annual $25,000 grants to SARC.  He said yes, under one condition - my family and I represent Texas on the Denmark ride with Sarcoma survivors from around the world the first week in July.  So, here we are.  In training and enjoying the privilege it is to be alive.

I’m enthused when I see that based on the recipient list for this letter, we could reach the $25,000 research grant goal if every single person were able to contribute just $100.  I know not everyone will find themselves able to right now, and some will mean to and forget, but some of you are able to compensate for those shortfalls with much more through your corporate matching, company foundations, personal tithing plans, or discretionary funds you have available.  No matter if this reaches you after the ride, your contribution is welcome whenever you get this!

And it’s easy and quick.  To make your tax-deductible contribution, just go to: http://liddyshriversarcomainitiative.org/Initiatives/TS%202006/donation_form.htm. Please be sure to indicate you are donating on behalf of the Buks Family riders in the first box.  Remember, your funds go to research, not to sponsor riders or any such thing.  Feel free to forward this to others in the Sarcoma community, including patients, caregivers and friends who want to be part of the solution. (The download form is safe, but if you need me to email you a pdf of the donor form, just reply and let me know.)

One of the unexpected blessings of this experience has been to be a part of real momentum for a cause that five years ago really had no perceivable movement.  Most of us crave the opportunity to have made a difference in the world before we leave it.  Little did I know this would be the avenue for me, or that I would be so loved and supported in it by friends, family and business community ¾ the only people in the world the Sarcoma community can count on to care enough to act.

From the bottom of my heart, I thank you for helping me fulfill my promise to God to use my life for good in this endeavor.

Onward with courage!

Deborah

Send mail to tammy@bukstool.com with questions or comments about this web site.
Last modified: 04/08/08