Running of the Pittsburgh Half Marathon in honor of Josie Sexstone

Dear Friends and Family,

Jason and I hope you will take a moment to learn about our niece Josie. Josie was diagnosed with Cystinosis at 14 months. Cystinosis is a rare genetic metabolic disease that causes cystine crystals to accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without specific treatment children with Cystinosis develop end stage kidney disease at approximately age nine.


Josie is a happy 6 year old. She loves to sing and dance. Josie takes multiple medications around the clock and has never been allowed to sleep through the night since diagnosed at 14 months. Her many medications taste and smell horrible yet she takes them with little complaint. Even with her mother and father’s diligence in keeping on top of her medications and lab tests, (they are very much involved in the latest treatments and research) she will still most likely need a kidney transplant in her pre-teen years.

The Cystinosis Research Network has funded several studies in effort to improve quality of life and the ultimate goal of finding a cure for all those with Cystinosis. They also provide tremendous education and emotional support to families affected with Cystinosis. The education also branches outside of families by providing invaluable guides to all aspects of patient care such as doctors, schools and care providers.

My husband Jason and I are running the Pittsburgh Half Marathon this May. We are running in honor of Josie and would really appreciate your consideration in donating to this wonderful cause. Please join us in the fight against Cystinosis. You can make a tax-deductible donation to the Cystinosis Research Network via their donation website at:

When donating please note “Josie’s Journey” in the “in honor of” field. Cash donations would be accepted by Jason and me. We would forward those funds to the Cystinosis Research Network.

Thank you in advance to all who donate. You are making a difference.

Jason and Heather Vest

Jack Greeley 14th Birthday Letter Fundraiser

Dear Family, Friends, and Colleagues,

A Christmas Story is an American movie classic, one that the Greeley family enjoys each and every holiday season. One of the many memorable scenes from this film set in 1941 NW Indiana is when nine-year-old Ralphie Parker helps his Dad change a flat tire. He’s beaming with pride that his old man would let him assist until he accidentally spills the lug nuts all over the side of the road. Ralphie knew he screwed up and made matters worse when he belted out, “Fudge!” as the bolts flew through the air into the dark night. Only Ralphie did not say “fudge” and met his fate with a bar of Lava soap. Ah, the good old days…..

Minus the comedic edge, life imitating art took place recently for the Greeley’s. As most of you know, our son, Jack has Cystinosis, a rare metabolic, genetic disease that presented itself around his first birthday in 2001. A side effect for Jack of the kidney disorder aspect of Cystinosis has been the development of rickets and softening of his bones, which has over time caused his legs to become knock-kneed and his ankles rolled in, causing extreme flat feet. Over this past Christmas break, we decided to have orthopedic surgery on his two knees (three staples were put in his left, two in his right) and two ankles (a screw was placed in each one) so that doctors could manipulate his still-open growth plates and have his legs slowly and naturally straighten out.

After Jack came out of surgery, some rehab commenced and he was not in a good place, even being an all-time trooper. With Mom, Dad, and a physical therapist helping him to stand up straight, Jack SCREAMED…the kind of piercing noise that could shatter china. What happened next made little Ralphie look tame as Jack let out a series of F-bombs, followed and alternated by a series of S-bombs that had never left his lips before, certainly not in this machine gun fashion…F-S-F-S-F-S-F-S-F-S. Mind you, Jack is a sweet kid, so the sheer volume and repetition in his language was surprising, impressive, unsettling, funny…take your pick. Given the circumstances of the pain, the morphine drip, and the anesthesia, it was all irrelevant because getting him better was all that mattered. Never before has Jack slipped liked this with language and what else came out of his mouth was most surprising. For the first time in 13 years since his diagnosis, under faint breath, Jack mumbled some gibberish like “why did he (I) have to have this surgery.” It is the closest thing to self-pity that Jack has ever uttered. So, if a kid ever deserved to belt out a few F or S bombs to fight through a challenge, it was Jack…heck, go to the top of the Sears Tower and yell as loud as possible, because he is a Champ and deserves it.

Why is Jack a Champ? Here is a quick timeline of what he has fought through the past 13 years and some other key milestones:

  • March 17, 2000: Born in Portland, OR…off the charts big and healthy…St. Patrick’s Day is re-defined!   Unknowingly, Jack inherited a rare, recessive gene combination that gave him Cystinosis. He will not outgrow the disease as it is embedded in his DNA.
  • Spring 2001 – Late 2002: Diagnosed…18 month battle of survival…hospitalized twice, vomited 10-15 times per day, went from top of the charts big to off the charts completely, profuse urination, did not eat solid food.
  • April 2002 – December 2006: Had a G-tube inserted through his stomach wall allowing for nourishment.
  • 2004 – 2005: Game changer…Jack learned to swallow pills!!!
  • 2006 – 2014: Cystinosis Research Network (CRN) headquarters relocated from Boston to its current location, Chateau de Greeley in Chicago.
  • Spring 2009: Jack was granted a wish by Make-A-Wish…inside the ropes at Sea World and other parks.
  • Spring 2001 – March 2014: 24/7/365 medical lifestyle begins. In total, Jack has – swallowed about 120,000 pills (including Cystagon, Jack’s main medicine that enables an amino acid called cystine to leave his cells in an orderly manner), woken up around 4,800 consecutive nights for meds, taken eye drops 8X per day since 2008, had between 300-400 doctor appointments, worn shoe inserts and night braces since 2004. Without some game changing advancements, this will continue to be the good fortune of Jack for the next 60-70 years.
  • 2003 – 2013: CRN has raised nearly $4MM to fund research for improved treatments (and ultimately a cure) and support families dealing with Cystinosis. This Greeley letter writing campaign has raised over $200,000 in this period due to support of wonderful friends and family like you.
  • December 2013: Knee and ankle surgery. By days 3-4-5 post surgery, Jack was his old self, either sitting in his wheelchair or scooting in his walker…smiling, whistling, and singing. The F and S bombs left the building.

While he has challenges and still lags behind in some parts of his development due to his 18 month fight for survival back in ’01 – ’02, Jack is fully mainstreamed in his day to day life. He gets all A’s and B’s in school, he has a keen curiosity on a variety of subjects, and he keeps busy with friends and activities. Is he likely to make an NBA roster? Probably not and you know what? Life is good!

Jack is by far not the only champ out there today. So many people live and thrive with rare diseases like Cystinosis. Yes, Cystinosis has the potential to impact all of the organ systems in the body leading to kidney failure, muscle wasting, diabetes, blindness, pulmonary deficiency, hypothyroidism, and neurological damage, but we do our best to dwell on the positive and can-do spirit of Jack; that’s what inspires us, not what might be. We are extremely confident of Jack’s bright future and his ability to get up off the mat.

Remember, Jack was born on St. Patrick’s Day, so he might get knocked down on occasion, but he is going to get back up…always. On a recent trip to the gym with his Dad, Jack wanted to do some of his rehab exercises and see if he was ready for an elliptical machine. “Dad, let’s do five minutes on the elliptical, okay?” Jack asked at the end of his workout. Jack got on and pumped away, legs and arms moving. Well, five minutes became 10 minutes and you could tell the Champ was working hard. Tired, but determined, Jack proclaimed, “Let’s do a mile.” Around 0.95 miles, Jack panicked and grunted, “Dad, take over for me,” so Dave got off his machine and got on Jack’s and asked him with some concern, “Jack, what’s wrong?” Jack was bent over the back cabinet of the empty elliptical machine next to his, clearly in pain. “Jack, should I help you?” asked Dave again. “NO! Go slow…I’m going to get back on…I need a break…I can’t feel my arms and legs. Let (gasp) me know (grunt) when you (gasp) get to .98 (grunt).” As a parent, what do you do? Clearly, Jack wanted to cross the finish line at a mile, so Dave took it to 0.98 and turned it back over to Jack who wobbled back onto the machine. Quietly, under his breath and as he grinded out the last 0.02, Jack said, “You…can…do it. You can…do it. You can do it!” This was pure determination and focus. No morphine drip this time and the F and S bombs were swapped out for another chant, while the fighting spirit remained.

Ironically, the Winter Olympics were on TV while Jack was working over the elliptical machine. His determination in that moment of time was inspiring...not a little, but a lot. It was all guts, it was tough, it was Olympian, and it was Champion. Twenty minutes later in the car ride home, Jack said, “Dad, look. My arms are still shaking.” No Gold Medalist that day or in two weeks in Sochi tried harder or got a better result than Jack that afternoon. Jack knows he has Cystinosis, but he does not care, because his normal is normal and he has too much to do, to see, to contribute, and to accomplish. That’s our Champ.

Please consider supporting the efforts of CRN by making a donation in honor of Jack and his 14th Birthday. Thank you, God Bless, and have the best of St. Patrick’s Days as we wish you and your family well.


Dave “Jack’s Dad” Greeley
Christy “Jack’s Mom” Greeley

As a 501(c)3 non-profit, advocacy group, your donation made payable to the Cystinosis Research Network is fully tax deductible. To be part of Jack’s 14th Birthday Celebration, please send your check to:

Cystinosis Research Network – 302 Whytegate Court – Lake Forest, IL 60045 (866) 276-3669 –

xmas-eve post-surgery staples

8th Annual C.H. Robinson Charity Golf Event to Benefit CRN to take place June 7th, 2014

lola-longThis year the 8th annual Cystinosis Charity Golf event has a personal connection to C.H. Robinson. On June 7th 2014 Lola Long, daughter of Information Technology Manager Jim Long will be our honored guest. Lola was diagnosed in 2013 with cystinosis. I am privileged, as a member of the CRN board, to have assisted Jim and his wife Melissa connect with CRN. Over the last few months Jim and I have spoken about the event and how his family could be involved. While I know the gauntlet of managing expenses is always present in business and our personal lives, I ask for your consideration this year to participate in any way you can. I have attached the official pamphlet for your review.

I hope you can join Lola and me on June 7th in Utah. Bring your shades, get a pink hat and be cool like her!

To see why this event is impactful: Cystinosis 2013

Book your hotel accommodation here: Marriot Cares about Cystinosis

To donate or pay your sponsorship fee use this link and note the “In Honor of” as “Lola Long or C.H. Robinson”. In 2013 this C.H. Robinson event was the largest single fund raiser for CRN. Your donation matters.

Cystinosis is a rare, genetic metabolic disease that primarily affects children. It causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without specific treatment, children with Cystinosis develop end-stage kidney failure at approximately age nine. The goal of our fundraiser is to provide money for research for more than 2,000 children worldwide.

Support Cystinosis Research Network, Inc. by shopping at AmazonSmile.

When you shop at AmazonSmile, Amazon will donate to Cystinosis Research Network, Inc.. Support us every time you shop.

Cystinosis Research Network, Inc.

Bracelet Fundraiser: Threads Gives- Cystinosis Stack

Threads has agreed to contribute 25% of sales for this bracelet stack, designed by Tahnie Woodward, to the Cystinosis Research Network.

Chandler's Chance....A Christmas Palooza for Cystinosis

On December 7th, the Moore Family will be holding the first annual " Chandler's Chance...A Christmas Palooza for Cystinosis" fundraiser.  We have a full slate of events and activities planned to start the holiday season in a festive, giving fashion:

  • Santa Claus - Mr. And Mrs. Santa Claus will be on-site to be photographed and listen to the children's Christmas wishes
  • Christmas Lights - Everyone will be thrilled by the 90,000+ Christmas light displays and decorations
  • Local Band - we will be entertained by the local band, "The Odays"
  • Holiday Firetruck Rides & Games - your children will be thrilled by opportunity to catch a ride on our firetruck and participate in holiday themed games
  • Eats & Drinks - Hot chocolate, coffee, cookies and other items will be served


The Village Club is proud to support Cystinosis Research Network

The Village Club is pleased to announce it has chosen Cystinosis Research Network as its philanthropy for the next two years and is eager to begin fund raising efforts.

The Village Club is a women’s social and philanthropic organization with 200 members, who reside in the Lincolnshire area, a northern suburb of Chicago. The club’s mission is to provide social opportunities for their members, welcome women to the community, and raise money and awareness of a chosen charity.

Most recently, The Village Club’s philanthropic efforts supported The Myelin Repair Foundation raising $20,000 through various events – Photos for Philanthropy, Murder Mystery Dinner, Body Works Spa Night, Salsa Funk to End MS - raffles and member donations. The Myelin Repair Foundation is the world’s largest non-profit research organization exclusively focused on developing the next generation of multiple sclerosis treatment, myelin repair.

Every two years, the Village Club Board of Directors votes to support a new charity. As Christy Greeley, CRN Executive Director is a long-time Lincolnshire resident and past president of the VC, the group is proud to support one from their own community.  As these women know Christy and her son Jack, and see the impact of this disease, they are passionate in their support for CRN.

Kick'n Cystinosis Kickball Tournament October 12, 2013, Lincolnshire, IL

Cystinosis T-Shirt Fundraiser

Support the Cystinosis Research Network by purchasing these "Team Cystinosis" t-shirts, developed by Briana Smythe.

T-shirts are $20 each, which includes shipping and handling.

Please contact Briana at This email address is being protected from spambots. You need JavaScript enabled to view it.  to place your order.

Net proceeds go to benefit CRN. Payment accepted either through the CRN website at through the "Donate Today" link (indicate payment for "T-shirt Fundraiser" in the "In Honor Of" box) or check made payable to Cystinosis Research Network and mailed to CRN, 302 Whytegate Court, Lake Forest, IL  60045.  Please indicate on the check that it is for the "T-shirt Fundraiser".

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Cystinosis Jewelry Fundraiser

Swarovski crystal, $8
18" or 24" chain $5
Cystinosis is a large stamp $22
Name up to 7 characters $20, up to 11 $22
Hope ribbon $10

Create whatever you want, or use your own chain. Plus 5% tax and $4 shipping.

 Cystinosis mom Barb Kulyk sells this jewelery and will donate her entire commission of 25% to the Cystinosis Research Network.  To place an order please contact her at This email address is being protected from spambots. You need JavaScript enabled to view it. This email address is being protected from spambots. You need JavaScript enabled to view it. .


7th Annual Cystinosis Charity Golf Tournament

The Cystinosis Charity Golf Tournament will be June 8th at Thanksgiving point. Shot gun start will tee up at 9:00 AM with registration, the putting contest and driving range opening at 8:05 AM. This a top fund raising event for Cystinosis Research Network.

Download the full pdf