Cystic Fibrosis Utah Great Strides Walk – This Saturday, May 17!
This is a guest post from Rick Davis, Chair of the Utah-Idaho Chapter of the Cystic Fibrosis Foundation.
Wow, has the past year screamed by! It’s well past due for my annual update of progress being made in the fight against Cystic Fibrosis and again invite your participation in the 2014 fundraising campaign. My afflicted grandchildren, Clare and Elliot, are both now 6½ years old, and continue to grow while responding positively to their therapies and medicines. Both receive nightly nutritional supplements through a tube surgically implanted directly into the stomach. Although initially quite uncomfortable, the extra g-tube feeding has brought prayed-for successes as Clare is growing stronger at a better rate, and Elliot has gained enough weight to support his extremely active lifestyle. Clare’s parents (Chrysi and Rick Davis) and Elliot’s’ parents (Alta and Mike Hales) continue to be models of diligence and patience in providing all of the physical, emotional and spiritual support that these precious children require every day. Their efforts are inspirational to many, specifically in the Salt Lake and Atlanta communities, but even more generally throughout the CFF communities nation-wide.
It continues to be a blessing to our family to assist in a small way with emotional and physical support with Elliot and Clare. As they grow and begin to perceive their distinctiveness, we adjust and broaden our understanding of this horrible affliction. Although there is still not yet a cure for this fatal disease, important developments of the last two years have brought rational optimism in the short-term progress of new medications which are effecting a virtual cure of the basic cellular defect caused by certain discreet strains of the disease. The drug released last year exceeded all expectations by eliminating virtually all of the negative cellular symptoms for carriers of a specific strain of the disease. Although our grandkids do not have that particular CF strain, confident pronouncements made at this year’s CFF national health providers meetings declared an expectancy that all CFF victims will be similarly treated with related compounds by the end 2017. We are absolutely thrilled with the expectations that these efforts will result in longer and fuller lives for Elliot and Clare.
Just over six years ago, I joined the Board of Directors of the Utah-Idaho Chapter of the Cystic Fibrosis Foundation (CFF) to assist in its fund-raising efforts. For each of these past six years, our family has whole-heartedly embraced the objectives of this extremely efficient charitable cause. I continue to serve as Chairman of the Board for this Chapter and am overwhelmed at the growth in public participation and revenue that we have experienced here in Utah. Alta and I are both convinced that we have a personal mission to help accelerate the reachable goals of the Foundation.
Without intending to be overbearing or to potentially endanger our friendship, I would feel guilty if I do not again express the urgency of my passion for this cause and invite your participation in 2014. Please click here to see the video that Amanda prepared for Clare and Elliot.
Feel free to pass the video on to anybody you would like. You can also watch Amanda’s other videos, chronicling the prior years’ progress of Elliot, Clare, and our family, by clicking on the other videos listed next to Amanda’s name.
Our family has sincerely appreciated concern that each of you has expressed over the past years. Many of you continue to ask if you might help again. I’m sure that many of you have received other announcements of CFF fund-raising events. I hope that these emails have neither been intrusive nor the cause of perceived pressure of any kind. The purpose of this and all prior emails is to clearly explain what assistance you might offer. You are invited to do one or more of the following:
1. Join with us at the “Great Strides” Walk scheduled this coming Saturday morning – May 17, at 9:00 am at the Energy Solutions Area (301 West South Temple) in Salt Lake. Elliot plans to be an active participant at the walk. Clare will attend the walk in Atlanta.
2. Make a donation to the CFF either by check or online at my CFF fund raising link.
3. Personally remind the parents of my grandchildren how much you love and admire them. They are doing a wonderful job of raising beautiful children under sometimes trying circumstances.
Again, please don’t take offense at the directness of this communication. But, if you desire to participate in any way, your efforts will be greatly appreciated. The Chapter is hoping to raise $150,000 though the Salt Lake Walk, more than 90% of which will go directly to the medical research and development efforts. Every contribution will help. You can make a donation on line through the above link (also shown in the video), or write a check to “Cystic Fibrosis Foundation” and mail it to me. I’ll forward it on. Even if your circumstances do not allow any financial contribution, please consider coming to either Great Strides Walk, just to show our children and their families your support. We have more of the Clare and Elliot T-shirts we passed out last year available for you. If the Walk doesn’t work for you, that’s “ok” too. There are a great number of other equally worthwhile causes that I know many of you are just as committed to as I am this one. Thank you for your support, your patience and friendship. If you have any questions, don’t hesitate to call or ask by return email.
Feel free to share this post with others who might be interested in participating, And please give me and my family the opportunity to reciprocate by helping you and your family sometime.
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