Genetics
Protocol:DIREGC07008
Condition or Disease: MPSI
Study Type: Observational
Status: Open for enrollment
Study Title: MPS 1 Registry
Principal I investigator: Alan Ikeda, MD
More Info: //clinicaltrials.gov/ct2/show/NCT00144794
Genetics
Protocol:DIREGC07008
Condition or Disease: MPSI
Study Type: Observational
Status: Open for enrollment
Study Title: MPS 1 Registry
Principal I investigator: Alan Ikeda, MD
More Info: //clinicaltrials.gov/ct2/show/NCT00144794
Genetics
Protocol:DIREGC07006
Condition or Disease: Fabry
Study Type: Observational
Status: Open for enrollment
Study Title: Faby Registry
Principal I investigator: Alan Ikeda, MD
More Info: //clinicaltrials.gov/ct2/show/NCT00196742
Genetics
Protocol:DIREGC07005
Condition or Disease: Pompe
Study Type: Observational
Status: Open for enrollment
Study Title: Pompe Registry
Principal I investigator: Alan Ikeda, MD
More Info: //clinicaltrials.gov/ct2/show/NCT00231400
Bleeding and Clotting Disorders
Protocol:20101221
Condition or Disease: Immune Thrombocytopenia
Study Type: Interventional (Clinical Trial)
Status: Closed for enrollment
Study Title: A Single Arm, Open-label, Long-term Efficacy and Safety Study of Romiplostim in Thrombocytopenic Pediatric Subjects With Immune Thrombocytopenia (ITP)
Principal I investigator: Alan Ikeda, MD
More Info: //clinicaltrials.gov/ct2/show/NCT02279173
Bleeding and Clotting Disorders
Protocol:GENA-99
Condition or Disease: Hemophilia A
Study Type: Observational
Status: Open for enrollment
Study Title: Prospective, multinational, non-interventional post-authorisation study to document the long-term immunogenicity, safety, and efficacy of Human-cl rhFVIII (simoctocog alfa) in patients with haemophilia A treated in routine clinical practice
Principal I investigator: Joseph Lasky III, MD
More Info: //clinicaltrials.gov/ct2/show/NCT02962765
Bleeding and Clotting Disorders
Protocol:NN7415-4322
Condition or Disease: Hemophilia A or B
Study Type: Observational
Status: Open for enrollment
Study Title: A prospective, multi-national, non-interventional study in haemophilia A and B patients with or without inhibitors treated according to routine clinical treatment practice (explorerâ„¢6)
Principal I investigator: Joseph Lasky III, MD
More Info: //www.clinicaltrials.gov/ct2/show/NCT03741881
Cherlyn Arrington strongly believes there are angels in our midst.
In fact, she will tell you those angels are partly responsible for the successful Santa Train event enjoyed by more than 150 Cure 4 The Kids Foundation patients and their families back in November.
We could not have offered this adventure without the help, support, and dedication of Cherlyn Arrington, her family and her troupe of volunteers.

We wanted to find out more about how this idea all came together, and during our conversation with Cherlyn, we learned it began with a simple request from her son, Brandon. He wanted to have a birthday party — something he’s never previously asked for. Brandon is on the spectrum, and a birthday party with all the sensory stimulation that comes along with it can be overwhelming and not so enjoyable for him. Not only did Brandon tell his mom he wanted to have a party, but he wanted to donate all the presents intended for him, to children who really needed them. Cherlyn asked her son to start thinking about which charity should receive the presents while she worked on the birthday party details.
With some luck, Cherlyn stumbled upon a local karate studio — Ageless Martial Arts —where the instructor, Sensei Lorenzo, had the perfect solution to keep the noises manageable for Brandon: noise canceling headphones! With the party now planned, Brandon had discovered Cure 4 The Kids Foundation and decided the children in treatment would receive the gifts intended for him.
“We had a great turnout, about 35 kids attended the party. When we explained that the gifts would be donated to Cure 4 The Kids Foundation they looked at us a little funny at first. Thankfully, we had Cure 4 The Kids Foundation’s Amber Williams at the party and she answered a lot of questions about who would ultimately receive the gifts,” said Cherlyn.
About that same time, Cherlyn says a couple of other things occurred which helped to bring the Santa Train event to fruition. Coincidence? Cherlyn also attributes this to her angels.
Cherlyn happened to be running for political office earlier this year, and she was discussing the idea of the Santa Train with one of her supporters. To Cherlyn’s surprise — and out of the blue — the caller suggested they could underwrite the cost of the event! Not long after that conversation, Cherlyn, who is also a Cub Scout leader, found herself at the Nevada State Railroad Museum in Boulder City on a Scout outing. That’s where she met one of the museum administrators who she would quickly learn was also responsible for the Santa Train.
Within 20 minutes of that discussion, Cherlyn already had 20 volunteers lined up and she began asking for more volunteers on her Facebook page to help make the Santa Train event a reality for Cure 4 The Kids Foundation patient families.
Cherlyn did not win her seat to become a member of the Nevada State Legislature. Even worse, the benefactor who had agreed to underwrite the Santa Train event had called to say they could not honor their original commitment to fund the event. Cherlyn did not give up.
She had a heart to heart talk with her family. Her children agreed to give up their Christmas presents so the Santa Train event could go on as planned. She enlisted the support of her friends who donated money to buy additional gifts for patients who would ride on the train. Although Cherlyn didn’t anticipate she would find herself trying to fund the event at the last minute, she believes the angels always had her back.
Despite the bumps and detours and sacrifices leading up to the initial Santa Train event, Cherlyn is determined to make this an annual event. It made us wonder why this particular event is so important to her.
“We need to celebrate life,” she Cherlyn. “When you have a sick child or a child that is not perceived to be “normal” by others, you need to celebrate every single day with that child. This is one way for us to do help do that,” she said.
We sincerely thank Cherlyn and her family for going above and beyond to help make the Santa Train event a memorable one for our patient families.
Cure 4 The Kids Foundation President and CEO Annette Logan-Parker and Roseman University of Health Sciences President Dr. Renee Coffman recently spoke with local media outlets to discuss the new partnership between the two organizations, as well as the benefits for patients, students, and the community.
Gwen Stefani continues to thrill audiences during her Las Vegas residency performances at the Zappos Theater inside Planet Hollywood Resort & Casino. We’re extremely honored and grateful that Gwen Stefani chose to support Cure 4 The Kids Foundation when she came to Las Vegas. In fact, a portion of every ticket sale is donated to our organization! This is a gracious and lasting gift to Cure 4 The Kids Foundation that will benefit our patients.
We’re also happy to see that her incredible show remains one of the “8 Hottest Las Vegas Residencies!” Tickets are available for concerts through November of 2019.
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