Inside Gillette Blog

Advocating for Rare Diseases

Posted On: 02/27/2015

Editor’s Note: Scott Schwantes, M.D., spoke on Tuesday, February 25 at Minnesota’s Rare Disease Day at the Capitol.  He, alongside legislators and a Gillette patient, advocated for children and adults who have a rare disease. Below are his remarks. Thank you Dr. Schwantes for moving advocacy forward!

Advocating for Rare Diseases Gillette Children's Specialty HealthcareI have the honor of serving as Gillette Children’s Specialty Healthcare’s Associate Medical Director of Pediatrics. My clinical practice focuses on pediatric hospice and palliative medicine. In this work, I’ve had the opportunity to work with some truly incredible and amazing families and I’ve come to appreciate that the “rare” becomes commonplace.

As we have come to appreciate today, children who have rare diseases comprise a very real and special part of our communities.

  • 30 million people in the US are living with rare diseases. Although the disease itself may be rare, nearly 10 percent of the population are living with a rare disease
  • Nearly two-thirds of those affected by rare diseases are children

Whether the underlying condition has a name such as DeBarsy syndrome, Schinzel-Gideion syndrome, Infantile Neuroaxonal Dystrophy or some as-yet un-named genetic syndrome resulting in a life-threatening condition, the condition is far from “rare” for these families. Even though some rare disorders affect perhaps only 50 children nationwide, to their families, it is present every day.

My work focuses on partnering with families of children who have rare disease to develop a “philosophy of care.” This philosophy of care:

  • Meets the child’s medical needs
  • Strives to fulfill the entire family’s sense of well-being by respecting their goals and values
  • Establishes a medical plan of care that ensures the individual child is the beneficiary of our interventions

Through this partnership, we work together to help children who have rare diseases thrive within their local communities. At Gillette we recognize that life doesn’t happen in the hospital or clinic, but at home and in the community.

So as we raise our voices in recognition of rare diseases, I want to express my gratitude to all of you. Thank you for allowing me the time to talk about the very special children and their families who can still thrive despite these rare diseases. Thank you for your continued support and advocacy so children who have rare diseases can have every opportunity to experience life in a way that’s guided by their family’s desires. Thank you for simply seeing the child and not the rare disease.

Gillette Families Advocate for Kids’ Health Care at Nation’s Capitol

Posted On: 07/09/2014

On June 24-25, families representing children’s hospitals throughout the U.S. took to Capitol Hill with a unified mission — to raise awareness, among members of Congress, of the important issues impacting children’s hospitals and pediatric health care today.  It was all part of Speak Now for Kids Family Advocacy Day, an annual initiative of the Children’s Hospital Association. We’re proud that two of those families, the Wittrock family of Burnsville, Minn. and the Harbarth family of Mankato, Minn., represented Gillette Children’s Specialty Healthcare.

The Wittrocks and Harbarths know firsthand the many issues that families of medically complex children often face.  Brandon Wittrock, 17, and Madison Harbarth, 7, are longtime patients of Gillette, a St. Paul-based hospital with outpatient sites throughout the state.  This made them ideal families to meet one-on-one with the state’s legislators, sharing their personal stories and stressing the important role Gillette plays as one of the nation’s only specialty care pediatric hospitals.

“Brandon was a million dollar baby by the time he was three days old,” Sheri Wittrock told members of Congress, referring to the cost of care when her son, Brandon, was born.  “Without Gillette, he wouldn’t be sitting here talking with you today.”

During their time in Washington D.C., the Wittrocks and Harbarths, along with Gillette representatives, received a warm reception from Senator Al Franken, Rep. Betty McCollum, and staff members from Senator Klobuchar and Rep. Tim Walz’s offices.  

They also had the opportunity to meet a national celebrity—Dr. Jennifer Arnold, a pediatric neonatologist and co-star of TLC’s The Little Couple, who participated in Family Advocacy Day with her husband and two children (Madison Harbarth is pictured with Dr. Arnold and her daughter, Zoey).  

Many thanks to our Minnesota representatives, Children’s Hospital Association staff, and our amazing patient families for a memorable and productive time in our nation’s capitol!

Volunteer Perspective- An Interview with Taylor Piepenhagen

Posted On: 05/27/2014

Taylor Piepenhagen (left), pictured with mom Kristina, while dropping off donations.

Q: Can you tell us a little about yourself? I am an honor roll student in my junior year of high school. I am an editor of the yearbook and I work at Walgreen's.

Q: What made you want to volunteer at Gillette Children’s Specialty Healthcare? I was sitting in the car last summer going to the mall with my mom. She was talking, but I was in my own world!  I was thinking about how I want to make a difference. I feel like people get so caught up in life stressors that they don't have perspective outside of their immediate life.

Q: How did you turn that revelation into action? I started a business with the help of my mom called Pretty in Pink Tutus and More. For every item sold including tutus, hair accessories, blankets, and burb rags, I decided I would donate two items. This is something close to my heart. I am putting my own money into this in order to put a smile on children’s and families’ faces. I want them to know people care about them.

Q: How did you select Gillette as your donation spot? When it came closer to donation time, I didn't really have to research what hospital I wanted! Gillette instantly came to mind. Plus it’s a local hospital, and that was really important to me.

Q: What was the donation experience like for you? Life changing- I can’t wait to go back with even more things!

Do you want to get involved at Gillette? Learn how by clicking 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.


Help Us Raise Awareness for Epilepsy!

Posted On: 03/25/2012

Visit Gillette today and you’ll likely notice an overabundance of one particular color – PURPLE!  On Purple Day, the Global Day of Epilepsy Awareness, organizations in the U.S. and beyond come together to raise awareness about the condition. From employees and patient families dressed in purple to purple-colored desserts in our St. Paul coffee shop, we’re excited to join the cause. As the Twin Cities’ only nationally ranked neurology and neurosurgery program, according to U.S. News & World Report, Gillette treats thousands of children with epilepsy each year. We offer the comprehensive services and full range of specialists to treat even the most complex cases. Help us spread the word by sharing this image on Pinterest. You can also post a purple-themed photo to our Facebook page. We’ll select one lucky winner to receive an “I love Gillette” T-shirt.


A Sneak Peek Inside Gillette’s Surgery Suite

Posted On: 06/06/2011

Last week, we introduced you to Gillette’s spacious new surgical suite in St. Paul. And this week, we couldn’t resist sharing a sneak-peek inside the beautiful new facility. We are pleased to report that our new facility is already up-and-running for our physicians, nurses, and patient families.

Here is the pre-anesthesia area, where clinical staff prepare patients for their surgeries.  The soothing, nature-themed imagery provides a calming environment for families.

A ceiling of sky and clouds greets patients as they make their way from pre-anesthesia to our operating rooms.

The corridor leading to our operating room mimics the nature theme seen earlier in the pre-anesthesia area.

And finally, one of our seven new state-of-the-art operating rooms. The rooms are spacious enough to accommodate the complex procedures – often involving more than one surgeon – that children with disabilities often need.

Thanks again to the Gillette staff, supporters, and families who helped us welcome the new space last week.

Introducing Gillette’s New Surgical Suite!

Posted On: 06/02/2011

Yesterday marked an exciting milestone for everyone here at Gillette: the completion of our expanded surgical suite in our St. Paul hospital. Physicians, nurses, and other surgical staff will begin using the space as early as next week!  Employees, supporters, and patient families received a guided tour of the state-of-the-art facility, which includes seven operating rooms, a surgical observation area for training residents and fellows, and spacious areas for both pre- and post-anesthesia care.

We were honored that several current and former members of the Minnesota State Legislature were able to attend our open house and tour. We’re especially grateful to members of our Legislature — without the $10 million that Gillette was granted in the state’s bonding bill last year, this much-needed facility wouldn’t exist.

Why was it so crucial that we expand our surgical space? Over the past 10 years, we’ve seen steady increases in demand for surgical services. In fact, the number of surgeries we perform each year has more than doubled since 1999. Advances in technology, and the growth of multi-team, multi-intervention surgeries, have made additional space not just a want, but a true need. With the opening of our new space, we’re equipped to provide growing volumes of kids the best possible surgical care for years to come.

Former State Senator Roger Moe and State Representative Lyndon Carlson toured a pre-anesthesia patient room.

State Representative Lyndon Carlson and State Senator Keith Langseth discuss features of the new space with Gillette staff members.

Join us at the Capitol on April 20th

Posted On: 04/12/2010

Calling all Gillette patients and families! You’re invited to join us on Tuesday, April 20th, to meet your district’s legislator and share your personal story of how Gillette has impacted you or your child’s life. You’ll be helping legislators understand the importance of disability services — and you’ll learn how to become an advocate for yourself and the disabilities community.

We’ll offer talking points on disability services, give you tips on how to tell your story, and provide background materials on legislation. Later, we’ll join you for a lunchtime Q&A session.


10:00 AM: Welcome and introduction with Gillette Advocates in the State Office Building       

10:30 AM – 12:00 PM: Meet with your legislators and share your personal story

12:00 PM – 1:00 PM: Lunch in the Department of Transportation Cafeteria

1:00 PM: Opportunity to attend hearings or meet with your legislator if you were unable to do so in the morning

If you’d like to participate, email Nikki at to sign up for Tuesdays at the Capitol. Nikki can also set up a meeting with your legislator in advance — just let her know if you’d like her help. If you can’t make it April 20th, we’ve scheduled two more Tuesdays at the Capitol days for April 27th and May 11th

Thanks for your support. We hope to see you at the Capitol!

Thank You, Gillette Supporters!

Posted On: 03/16/2010

We have exciting news to share.  Earlier this week, we received word that Governor Pawlenty had finished his review of the Capital Investment Bill.  As he had promised, he did exercise the line item veto to remove nearly $320 million in projects from the original $999 million bill.
However, the $10 million that was included for Gillette’s surgical expansion was not cut and was included in the final law.
This news will allow us to move forward with our much-needed surgery expansion later this year.  We know many of you took the time to write or call your state senators and representatives over the past few months urging their support.  And in just the past two weeks, hundreds of you wrote or called Governor Pawlenty to ask for his support.

Our expanded surgical suites will be large enough to accommodate the complex surgeries so many of our patients need. They’ll also feature state-of-the art equipment and the latest advancements in surgical technology.

Thanks to our patient families, staff, and community advocates for all you have done, and continue to do, to support Gillette. We’ll post news and updates on our surgical expansion here, so check back often.

One Final Push to Support Gillette

Posted On: 03/10/2010

As you may have heard in the media, the Minnesota Bonding Bill is scheduled to go to Governor Pawlenty as soon as today, Thursday, March 11.  Governor Pawlenty has indicated that he is willing to work with the bill, but may need to line item veto some of the projects in it to get closer to the size he has requested.
Currently, Gillette is included in bill for $10 million which would support the greatly needed expansion of our surgical area.
We are hoping we can ask you to simply pick up the phone and leave a 15-second request for the Governor.  Leaving a voice mail or a message with the person who answers the phone is fine.
We would like to get as many people as possible to call the Governor today at (651) 296-3391 (or toll free: (800) 657-3717).  So please feel free to forward this email to friends and family in Minnesota.
The message is simple:
1. Let him know that Gillette is important to you.
2. Thank him for his support of Gillette in the past, and encourage him to support the Gillette project and not line item veto it.
Thank you for your ongoing support!

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