Inside Gillette Blog


New Research Offers Hope for Rett Syndrome Patients

Posted On: 12/02/2014

By: Timothy Feyma, M.D., Art Beisang, M.D. and Marcie Ward, M.D.

Rett Syndrome is a rare genetic disorder usually caused by mutations in the gene Methyl-CpG-binding Protein 2 (MECP2) that is located on the X chromosome.  Rett Syndrome occurs almost exclusively in females, since the gene that most often causes it is located on the X chromosome, and is thought to affect 1 in 10,000 girls. Males who inherit this genetic change often do not survive pregnancy. 

New Research offer hope for Rett Syndrome.Girls who carry the mutation often have slightly delayed, or seemingly normal development until 6-18 months of life when loss of developmental milestones may occur.  In many cases purposeful hand use and language can be lost.  The disease often continues to slowly progress over time and in time the ability to walk may be lost.  Seizures, scoliosis, constipation, and breathing pattern abnormalities are also frequently seen.

Gillette Children’s Specialty Healthcare developed a Rett Clinic in 2005. Over time we have collaborated with researchers locally to investigate ways to further learn about Rett Syndrome while providing expert care for patients with Rett Syndrome.  To date, there has been no treatment discovered that cures Rett Syndrome.  Given our work with this unique population, the Gillette Rett Clinic was approached by Neuren Pharmaceuticals to participate in a trial of new drug (currently called NNZ-2566) being developed to promote brain development.  

The Neuren guided experiment involved use of varying doses of the NNZ-2566 compound in addition to the use of a placebo group who received no active treatment. This trial looked at parental observations of their child’s behavior and seizures while on treatment in addition to physician graded observation scales, EEG, EKG, and laboratory data.  Improvement in functioning with no significant side effect burden was seen. Click here to read the initial announcement by Neuren Pharmaceuticals. The full details of the study will soon be released, but generally speaking improvement was seen in motor function, symptom burden, and in regard to parent specific concerns.

The hope for our clinic at Gillette is that we can continue to collaborate in such activities that will attack the root cause of Rett Syndrome in addition to managing symptoms. This study provides the first evidence of a treatment that might do just that.  We hope in time to manage the course of disease and prevent progression / regression while fostering optimal development for all those afflicted by Rett Syndrome.

 


Connor’s Journey: An Update

Posted On: 07/31/2014

By: Becky Miller

Editor’s Note: This May Connor Miller was featured in a KSTP Story. Click here to watch it now and then catch up with Connor below.

Connor is an energetic, (very!) opinionated and happy one-year-old.  He has a zest for life that is difficult to explain in words.  Perhaps it is because of the physical challenges he has had to overcome, or perhaps he simply loves life.  Regardless, his energy and excitement are contagious – it is almost impossible to avoid smiling when he is near! 

Connor’s journey at Gillette began when he was just 1-month-old. Throughout the past year, Connor has accomplished some pretty amazing things -- he learned to crawl, a milestone that we were unsure he would ever achieve, he celebrated his first birthday, he learned to walk, and, most importantly, he made it through another surgery at Gillette! 

At our visit with Dr. Van Heest in April, she observed that Connor’s use of his wrist and hand remained relatively limited and unchanged since our previous check-in. She explained that, as a result of his previous injury and surgery, Connor had built up a significant amount of adherent scar tissue in and around the tendons in his wrist and hand. She recommended that an additional surgery be performed to remove these adhesions, in hopes of significantly improving his ability to actively use his left arm and hand.  This surgery, his third at Gillette, was completed on July 11, 2014.  Dr. Van Heest was able to remove a significant amount of scar tissue and we have already seen improvements in Connor’s passive and active range of motion!

After a brief break from occupational therapy to allow his incision to heal, Connor restarted twice-weekly OT visits. As a somewhat stubborn (have I mentioned opinionated?) one-year-old, these visits are proving to be more difficult than they used to be.  As he continues to get older, he wants to play and he most certainly does not want anyone touching his arm! We are extremely grateful for the wonderful care and patience that his OTs, Alex and Lindsey, show toward him during his visits. They know his personality well and are great at finding creative ways to both entertain him and address his therapy needs.

As we think about Connor’s future (which we do a lot!), whether or not he will need additional surgeries is unknown. What we do know, however, is that he has a fantastic team of medical professionals standing behind him to help guide our family in making the best decisions on his behalf.  We are, and forever will be, incredibly grateful for the amazing care that he receives at Gillette!


 

 


KARE-TV Captures Camp Get-A-Well-A at Gillette

Posted On: 06/24/2014

Camp-Get-A-Well-A is a much-loved tradition here at Gillette — and this week’s camp, with a “Superheroes” theme, is no exception!  The camp, which happens daily from June 23-27, brings the joys and activities of summer camp to hospitalized children.

The week’s first activity for patient campers and their families was decorating a Superhero cape to wear during Superhero Movie Night later in the week. More than 120 capes were created with the help of volunteers from REMAX and KFAN during the Monday morning activity, held in Gillette’s lobby. And a special guest, KARE-TV, was on hand to capture the fun.

KARE-TV’s news segment ran Monday, June 23 during the 6:00 p.m. newscast. Anchors Julie Nelson, Randy Shaver and meteorologist Belinda Jensen had positive things to say about Gillette before and after the segment aired: “When you can’t go to summer camp, summer camp comes to you. It doesn’t get any better than this. I had a chance to tour the facility. It was bright; the staff there has all of this positive energy. Good for them.”  

 

Click here for a photo album of this week's camp experience. Many thanks to KARE-TV for stopping by, and to our generous sponsors Deli Express and Quality Resource Group, for making these great activities possible!


Mankato Clinic and Gillette Children’s Specialty Healthcare

Posted On: 04/15/2014


Gillette’s Simulation Center Featured in Pioneer Press

Posted On: 03/20/2014

Gillette's surgical simulation center, which opened in 2012, is a state-of-the-art facility located adjacent to our hospital's surgical suites and imaging center. Our medical staff use the space to rehearse complex surgical procedures in a real-life surgical environment - and as part of training for new residents and fellows. The surgical simulation center is also used to educate science-minded high school students about potential careers in the medical field through hands-on learning. That role was recently highlighted in the March 16 edition of the Pioneer Press 'Education Notes,' a weekly round-up of happenings at Twin Cities-area schools. See below for more - or, read the story on the Pioneer Press website.

More than 50 students from the biomedical sciences program at East Ridge High School in Woodbury visited Gillette Children's Specialty Healthcare as part of their medical interventions class. The students worked with biomedical professionals and used the surgical simulation lab where doctors and nurses are trained. East Ridge has more than 250 students in the program.


Radio Spot Highlights Gillette Tree

Posted On: 01/07/2014

Listen to KS95 (94.5 FM) this week, and you’ll hear a familiar name: Gillette Children’s Specialty Healthcare.  It’s all thanks to the local radio station, which generously granted us a free 60-second radio spot. Not only does the spot highlight the role of Gillette’s specialty-care expertise in moving our patients and families forward, it also calls attention to our illuminated Gillette Tree—a symbol of the expertise of our staff and generosity of our donors.  The spot closes by encouraging listeners to support Gillette with a donation. Listen to the spot here!

 


Charitable Giving Segment on WCCO-AM’s “Your Money”

Posted On: 12/18/2013

Giving back and being charitable were the topics during the December 8th “Your Money” radio show on WCCO-AM sponsored by the Wealth Enhancement Group. As a thank you to their loyal listeners, the Wealth Enhancement Group is offering a free second opinion on financial plans for retirement. For every person who schedules an in-person or a telephone review, the Wealth Enhancement Group is donating $100 to Gillette Children’s Specialty Healthcare.

Guests on the program included Wendy Paulson, Gillette Children's Specialty Healthcare, who provided an overview about Gillette and how donations benefit Gillette patients and Ryan McKeown, Senior Vice President, Financial Advisor from the Wealth Enhancement Group, who answered listener’s charitable giving questions.

The “Your Money” radio show airs on Sunday mornings. The program features Bruce Helmer and Peg Webb from the Wealth Enhancement Group who bring their unique perspectives and insights on a broad range of financial topics, from investments to estate planning.

Pictured left to right: Denny Long, WCCO-AM; Bruce Helmer and Peg Webb, Wealth Enhancement Group; Wendy Paulson, Gillette Children's Specialty Healthcare; Ryan McKeown, Wealth Enhancement Group.

 


TV Coverage Captures Tree Lighting

Posted On: 11/21/2013

On Monday evening, Gillette Children's Specialty Healthcare illuminated a tree with 10,000 lights visible for miles in downtown St. Paul. The tree is a symbol of the hope our patients and families have, the expertise of our staff, and the generosity of our donors. The event attracted coverage from local TV stations KARE 11, WCCO and FOX 9. You can also donate and help us light Gillette's tree. 


10,000 Lights of Hope

Posted On: 11/19/2013


Dairy Queen Recognizes Manager’s Good Deed with Donation to Gillette Children’s

Posted On: 10/10/2013

Joey Prusak, the 19-year-old manager of a Hopkins, Minn., Dairy Queen store, had just finished serving one of his regular customers when he witnessed behavior best described as a random act of unkindness.  His customer, a visually impaired man, unknowingly dropped a $20 bill from his pocket.  A woman in line behind him quickly picked up the money and slipped it into her purse.  Prusak earned national acclaim when his good deed—refusing to serve the woman, then giving his customer $20 from his own wallet—exploded on the Internet. 

Prusak has since received praise from millions (including Dairy Queen owner Warren Buffett!) for his actions—a good deed he modestly describes as “the right thing to do.”  And this week, Dairy Queen honored Prusak in a way that’s in keeping with the spirit of his actions—presenting a $5,000 check in his name to Children’s Miracle Network Hospitals, the company’s charitable partner.  Locally, those funds will help thousands of children treated at St. Paul, Minn. based Gillette Children’s Specialty Healthcare.

Dairy Queen President and CEO John Gainor also presented Prusak with the company’s prestigious Red Spoon Award in recognition of his actions, which reflect the company’s commitment to integrity


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