A Blend of Life, Family, Awareness & Tales

Posts tagged ‘JDRF’

Inspired.

Yesterday my daughter and I watched our friend turn into an Ironman.

Training for and completing the Ironman competition is no simple feat in itself. It is a 2.4 mile swim, 112 mile bike ride, with a 26.2 mile marathon chaser. Truthfully you had me at entering a lake with nearly 3000 other people. Yikes!

Ironman-Swim-Start1

Every one of those athletes impressed me yesterday, but what really inspired me is that our friend did all of this with Type 1 Diabetes.

No big deal you may think. Well, it is time to think about it. She pushed herself through those 140.6 miles from sun up to sundown, with a fantastic time might I add, while having to also act as her own pancreas. (We were exhausted just cheering and checking online updates!) While she pushed her body, she had to manually keep track of her blood sugar which I am sure was always on the brink of dropping too low or maybe too high from overtreatment. I was not there with her, nor do I have any idea as to what her plan was, but I know she had one. I know she probably ate high sugar snacks during the day even though she probably could no longer stand the taste of them because she had to. Not only to compete, but also simply to live. She probably felt awful at times and wondered, is it because of her blood sugar or because she was just exhausted? She probably had to wake herself up a couple of times during the night to test her blood sugar to make sure she wasn’t  dropping too low. I know I worried about her several times!

She did all of this with a smile on her face.

Watching her cross the finish line was amazing, but our highlight was earlier in the day. We were cheering her on during the bike ride and she cheered back to my daughter, her Type 1 buddy. She took that moment to remind my little girl that she too can do anything. Wow.

My little girl was forever changed yesterday and for that we thank you. Thank you for being such an inspiration. And congratulations on an amazing achievement!

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One Wish.

One Wish.

If I had one wish, it would be a wish for a cure for Type 1 Diabetes (T1D). It would allow my daughter to go to the park, or school, or wherever she wanted without worrying if she brought her test strips, her ‘poker,’ insulin, fast acting carbs, and extra supplies of all kinds. It would allow her to go to a sleepover without her mom. It would allow her to go to college without us worrying that she will check her own blood sugar at two in the morning or worse yet, not wake up. It would allow her to have a baby without constant monitoring and worrying about her unborn child. And finally it would allow her to grow old some day without the worry of heart disease, blindness, kidney failure or any of the other complications that are often caused by T1D.

One Wish.

It might be selfish, that if gifted one wish, I would spend it on my daughter. But this one wish is for the eighty people in the U.S., half of them just children, who are diagnosed each day with T1D. Nearly 30,000 people in our country alone each year are added to the 3,000,000 U.S. citizens that are testing, injecting, counting and treating all day every day. A cure would potentially eliminate the nearly $15 billion in T1D healthcare costs racked up in the U.S. each year. (JDRF)

Just this past week, I was put in touch with a mother hours before her son was diagnosed. They had not yet gone to the doctor, and after communicating with her I was 90% sure her son had T1D. I imagine she still had hope that what she had read, the signs that her son was showing were simply coincidences, it couldn’t be something that would happen to her son. Truly I wish they hadn’t been added to the T1D family.

One Wish.

P1120543

It was the theme of this year’s JDRF Gala in our chapter. I didn’t come up with the theme, but what a beautiful one it was. I am a member of our Gala planning committee, so I can say I am proud of what we accomplished again this year.  Our one beautiful evening, with the help of countless volunteers, donors and bidders, raised

$450,432

Yes, you read that right, nearly a half a million dollars that will be used to not only improve the lives of those with T1D with better working technology and insulin, but also used for research that will one day lead to a cure. These dollars were the result of a collection local people and businesses and their generosity. The gala committee itself is diverse, and what an honor to be included. It was so fun to see one another at this grand event after months of planning. The donors, which ranged from local firefighters to a coach that lead our university to the Final Four this spring, are heroes in my book. We even had a beautiful young woman willing to share her T1D story with all of us, and I can say that more that once my eyes filled with tears with not sadness, but with all the hope that came with this evening.

One Wish.

So yes, I have one wish. A wish that we could all come together some day and say, “Remember when we used to plan that big party to raise money for a cure for Type 1 Diabetes,” and maybe someone new in the crowd would say, “Diabetes, what’s that?” That is my wish.

I really enjoy this video, and was so pleased to see it at the gala last night.

Thank you to all the Gala Committee members. It has been a true pleasure working with all of you, and look forward to next year. Plus last night was a blast!

 

Eighty More People a Day.

Approximately 80 people in the U.S. each day join a club nobody wants to be part of. According to the Juvenile Diabetes Research Foundation, 40 kids and 40 adults every day are diagnosed with Type 1 Diabetes. In addition, it is estimated that as many as 3 million people may have Type 1 Diabetes. While this is a large number, it represents only five percent of the total Diabetes population. 

Dr. Denise Faustman, MD, PhD

Research is ongoing worldwide for both new treatments, and a cure for Type 1 Diabetes. One scientist that I have been following for the past couple of years, Dr. Denise Faustman, MD, PhD, has recently released some very promising news in her quest to cure Type 1:

“… (June 27th) I presented additional results from the Phase I human clinical trial testing BCG vaccination as a treatment for advanced type 1 diabetes.  These data show the potential of BCG treatment or a similar therapy to turn the pancreas “back on” briefly, even in people who have had type 1 diabetes for many years. 

Data from the Phase I study show that BCG treatment:

  • Eliminated the disease-causing T cells that attack the pancreas
  • Increased the number of beneficial regulatory T cells (Tregs)
  • Restored the ability of the pancreas to secrete insulin for a time

Notably, these participants had been living with type 1 diabetes for an average of 15 years.”

 Dr. Faustman’s research gives me hope. Using a the generic drug BCG (bacillus Calmette-Guerin), which has been used safely on humans as a vaccination to prevent tuberculosis and as a treatment for bladder cancer, she has found a way to turn restore the body’s ability to produce insulin. Of all the research out there, to me this seems to be the most promising.

Could this be the answer?

Thank you Dr. Faustman for all you have been doing. While you don’t know our family, our family feels like we know you. I speak of you and your work often, sharing your achievements with any that will listen. I donate when I can, and while the amount is often small, I hope that it can help.

If a cure is in the future, then prevention is just around the corner. Hopefully someday soon we can all see the Type 1 Diabetes club disband as current membership wans, and new members cease to exist. 

I haven’t written about Diabetes much lately, but I was reinspired this afternoon after checking out a blog by a fellow “pancreas,” another Type 1 Mom named Julie Colvin. She has a daughter with Type 1 Diabetes, is an excellent advocate for the Cure and is soon to release her book, A Cure For Emma.

Golfing for a Cure!

Yesterday my little girl and I participated in our local Friends of JDRF (Juvenile Diabetes Research Foundation) golf outing. It was a fabulous benefit, largely due to my husband’s passion and event planning skills. Of course there were others involved with the planning, but I am so very proud of him and all that he did.

We started with a great lunch, followed by approximately 150 golfers hitting the course. Ominous weather was predicted for several days, but as the golfers arrived the clouds slowly drifted away, and by afternoon the sun was shining. We ended off the day with hors d’oeuvres, prizes for the golfers and a fantastic turnout for both the silent and live auctions.

My daughter and I, as well as another “Child with Type 1” and his mother, sold raffle tickets raising additional money. My little girl and I also spent a lot of time at hole number six, rolling dice (ok, I know the proper word is “die,” singular of dice, but it just feels weird saying that) with each foursome, to see where they could tee off, some cutting off as much as 250 yards with the roll of a three! The highlight for both my daughter and I though, had to be our golf cart that was just for us for the entire day!

Hole #6, not just for golfing anymore. Also cartwheels!

We really enjoyed visiting with each and every golfer, so many nice people there for the same cause. Many great stories, a few old friends and even more new ones.

A lot of money was raised and given to the JDRF, thanks to the many generous souls who donated their time, money or talent yesterday. Thank you everyone for your support, and most of all, Thank You Wonderful Husband for all you did to make yesterday such a success!

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