This 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.
When you shop at AmazonSmile, Amazon will donate to Cystinosis Research Network, Inc.. Support us every time you shop.
Threads has agreed to contribute 25% of sales for this bracelet stack, designed by Tahnie Woodward, to the Cystinosis Research Network.
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:
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.
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.
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".
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.
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.
Just wanted to let you know about a fundraiser we are doing for the Cystinosis Research Network on May 11, 2013. This will be our second year of hosting May!Hem (see attached flyer). This year, we’ve also added on online auction component as well. Hopefully, we will have several families impacted by cystinosis in attendance (Frankie & Laura McGinnis, Stephanie Hassan, Catharine Kelly, Michelle Hanley Wachter, Micke Newcomb).
Oldham County Chamber of Commerce invites you to Costume Crazies Cystinosis fun run/walk on Saturday, April 27, 2013.