Novo Nordisk

Be a Hero!

Laurie Kelley June 22, 2014

To continue with our updates of programs and services from Pharma, here’s a new and exciting one!

Remember when you were evolving from a teenager to a young adult – trying to assert your independence, work through all the social politics of high school, and figure out the direction of your life? Then consider the challenges of living with hemophilia on top of that – it can add a whole other layer of complexity. That’s why Novo Nordisk is offering HeroPath™ to help youths between ages 15 and 20 better navigate this transitional life stage.

HeroPath will be led by Jeffrey Leiken, Master Trainer at Evolution Mentoring and creator of HeroPath – you may remember his passionate speech about life transitions and personal growth at National Hemophilia Foundation’s 2013 Annual Meeting. HeroPath will focus on helping participants grow their skills for success in areas including relationships, education, and careers.

Here’s the exciting part: Up to 25 selected US participants with hemophilia A or B* between ages 15-20 will have the opportunity to work directly with Leiken, his team of expert coaches, and their peers at a kickoff weekend in Chicago from August 22-24, as well as continue to receive personalized monthly coaching for the following year.

Visit http://www.changingpossibilities-us.com/HeroPath to complete your official HeroPath™ application, including several multiple-choice questions and an up to 150-word explanation of why you are a great fit for the program. Prefer not to write? Provide a 60-second video explanation instead – just upload your video to YouTube™ and paste the URL into the application form!

All entries must be received by 11:59 p.m. EDT on Thursday, July 17, 2014. Leiken will select up to 25 participants based on responses to the multiple-choice questions and the level of creativity and original thought conveyed through the essay or video entry.

What parents need to know: HeroPath™ isn’t just a weekend retreat – it’s a yearlong program designed to help offer teens or young adults the tools to identify:
·        What direction to move in professionally based on interests, strengths, talents, and natural proclivities
·        What kind of people to associate with personally and professionally (Leiken and his team will help participants give voice to their own values)
·        What kind of person they want to be

HeroPath™ is also structured to help develop their ability to manage their state, stay focused, and perform under pressure to help make better decisions.

Questions? See Complete Official Rules at www.changingpossibilities-us.com/HeroPath for details.

*Participants cannot be on a federal health care program.

This sevice announcement was sponsored by Novo Nordisk.

Inhibitor Summits are Coming!

Laurie Kelley March 17, 2014

I was present way back at the first ever inhibitor summit meetings, brainchild at the time of George McAvoy of Novo Nordisk, and funded by Novo Nordisk. Now run by National Hemophilia Foundation (NHF) with funding from Novo Nordisk, NHF is pleased to announce the 2014 Inhibitor Education Summits, designed to specifically cater to your inhibitor educational needs. Come join this dynamic event and interact with expert healthcare professionals as well as other patients and their families for a weekend of education designed to improve your overall health and quality of life.

The Summits provide:

• Travel and lodging financial assistance provided for eligible patients and their caregiver(s)

• Both locations accessible to wheelchairs and other mobility devices

• Four different educational tracks tailored to suit your needs as a patient or caregiver

• An Interactive Education Camp for Youths, including an off-site activity (Ages 4-12)

• Childcare for infants-3 years old

To learn more, contact NHF: 877-560-5833 or inhibitorsummits@hemophilia.org

or go to https://www.nhfinhibitorsummits.org/register.aspx

HERO: One who is revered for sacrifice, skills, dedication…

Laurie Kelley December 16, 2013

I’m in Italy this week on some business, where I am surrounded by Italian heroes, both mythical and real. While here I received notice of some videos you might like to see. These are the latest videos filmed at the US Hemophilia Experiences, Results, and Opportunities (HERO) Summit for Solutions, of which I took part. Some of our top opinion leaders from our community were invited together by Novo Nordisk to brainstorm ways to implement the findings of the HERO study, supported by Novo Nordisk, the largest psychosocial study on hemophilia ever done.Please feel free to view!

The HERO Initiative: Improving Understanding of the Burden of Hemophilia on Families focuses on our discussion in Workshop 2 around how hemophilia can affect the entire family in different ways, including emotionally, financially, and professionally. This video includes the following US HERO Summit participants:

·        Mary-Jane Frey, Nurse Coordinator, Children’s Hospital of Michigan
·        Chris Guelcher, Nurse Practitioner, Children’s National Medical Center
·        Dana Kuhn, PhD, President and Founder, Patient Services, Inc.
·        Dawn Rotellini, Director of Chapter Development and Training, National Hemophilia Foundation
·        Michelle Witkop, Bleeding Disorders Nurse Practitioner, Northern Regional Bleeding Disorder Center

The HERO Initiative: Working to Understand and Improve Pain Management in Hemophilia focuses on our discussion in Workshop 3 around the impact of pain on the daily lives of people with hemophilia and approaches to better evaluate and manage this common complication. The following US HERO Summit participants appear in this video:

·        Mary-Jane Frey, Nurse Coordinator, Children’s Hospital of Michigan
·        Neil Frick, Vice President for Research and Medical Information, National Hemophilia Foundation
·        Chris Guelcher, Nurse Practitioner, Children’s National Medical Center
·        Michelle Witkop, Bleeding Disorders Nurse Practitioner, Northern Regional Bleeding Disorder Center

To view all the videos, visit the Novo Nordisk YouTube Channel , and please feel free to share them with your friends, family, and organization members!

Great Book I Just Read
The Boys on the Boat by Daniel Jay Brown

Incredible true story of underdogs who go to the Olympics: the University of Washington’s 1936 eight-oar crew, their amazing and youthful coxswain, their aloof but dedicated coach and a legendary boat builder team together for an epic quest for an Olympic gold medal during the 1936 Olympics in Nazi Germany. The story revolves particularly around one boy, Joe Rantz, abandoned entirely by his family during the depression, who has to survive on his own, put himself through college and discovers his calling rowing crew. He seeks to fill a hole in his life, and learns to trust. He and his team became national heroes at a time when Germany sought to dominate sports, and eventually the world. It’s a lesson in human spirit, indomitable will, teamwork, leadership, strategy, family, optimism and hope. Along the lines of Seabiscuit and Unbroken, both of which happened at the same time as this story. Fantastic writing and story! Five/five stars.

Mix It Up: New Device for NovoSeven RT Users

Laurie Kelley May 14, 2013

Here’s a press release about a new reconstitution device from Novo Nordisk. It’s very cool that the idea originated with the Novo Nordisk’s Consumer Council, which I used to facilitate (and miss! great times):

Novo Nordisk is pleased to announce the introduction of a new reconstitution device for NovoSeven® RT (Coagulation Factor VIIa [Recombinant]). Beginning on May 1, 2013, NovoSeven® RT with MixPro™ will replace the current NovoSeven® RT and will be available to congenital hemophilia A or B patients with inhibitors, acquired hemophilia, and congenital factor VII deficiency.

Although the product will remain the same, NovoSeven® RT with MixPro™ will now include a syringe prefilled with diluent and a vial adaptor to reduce the number of steps needed to prepare NovoSeven® RT for infusion. This is expected to assist NovoSeven® RT patients and their caregivers. Previously, the NovoSeven® RT package included two vials, one containing the active drug substance as a lyophilized powder and the other containing diluent, requiring two additional steps for reconstitution.

This enhancement was developed in response to suggestions from the Novo Nordisk Consumer Council, which comprises bleeding disorder community members. NovoSeven® RT with MixPro™ received approval from the U.S. Food and Drug Administration in October 2012.

It is important to note that although the MixPro™ prefilled diluent syringe uses a standard luer-lock connector, not every needle-free IV system is compatible with glass prefilled syringes like MixPro™. If you are a health care professional with questions, please contact Novo Nordisk Medical Information at 1-877-NOVO777 for assistance and compatibility information. All others should contact a health care professional with questions.

For more info visit www.novosevenrt.com http://www.novosevenrt.com

A Camp to Call Their Own

Laurie Kelley January 7, 2013

By Janet Brewer

The bleeding
disorder community is small, comparatively speaking. Smaller still is the community of families and individuals affected by an inhibitor. But what we lack in size, we make up in our voices.

The hemophilia community has advocated for better care, better products and better programs to support our daily needs. As a result, we have arguably the best treatment model in the world. In the last 20 to 30 years, hemophilia has realized a standard of care that involves routine prophylaxis. This 2-3 day per week regiment enables most affected by hemophilia to lead a relatively “normal” life. Annual chapter meetings, national education conferences offer a plethora
of information specific to those living with hemophilia. Week long summer camp programs where self-infusion is taught and opportunities to meet peers in an environment that promotes leadership are a right of passage for our community.

Yet the smaller subset of individuals and families affected by an inhibitor continues to struggle. An inhibitor diagnosis changes the entire landscape of hemophilia treatment. Routine prophylaxis becomes a thing of the past until the inhibitor is tolerized. Immune tolerance treatment (ITT) can take years of daily, sometimes twice daily infusions and even then, not every child becomes tolerized. There is no single factor product that works to stop bleeding consistently. Bleeds can take days, even weeks to stop. Hospitalizations are frequent and family life is turned upside. Attending a weeklong hemophilia summer camp often becomes a wish. When attendance is possible, there is a high probability that there won’t be anyone else there with an inhibitor. Participating
in many of the activities that other blood brothers can do with prophylaxis is impossible.
As one camper with an inhibitor states, “How I envied them and wished I could
do what they could do.”

Jane Cavanaugh Smith and Janet Brewer conceived the idea for Inhibitor Family Camp. As long standing members of the hemophilia community and mothers of sons with an inhibitor, they endeavored to bring families affected by an inhibitor together in an activity filled, intimate environment and where better than camp? The very nature of a camp setting provides opportunities to try things for the first time, stretch ones limits and create peer relationships.

In 2010, Comprehensive Health Education Services (CHES) sponsored the very first Inhibitor Family Camp at Victory Junction in North Carolina. For the first time, children with an inhibitor and their families had a camp to call their own. Supported by an educational grant from Novo Nordisk, its goal then and still is to bring together families who continue to struggle with the challenge
of an active inhibitor. Families of a child whose inhibitor has tolerized are welcome if space allows. With camp now in its third year, CHES has partnered with Serious Fun camps (founded by Paul Newman), The Painted Turtle in California and Victory Junction in North Carolina to bring two Inhibitor Family Camp programs to the inhibitor community. In response to participant requests, this year’s camp program will offer three nights of education, activities and fun!

Inhibitor Family Camp is limited to 25 families per camp and slots fill up quickly. The Painted
Turtle session will be held Friday April 19 to Monday April 22, 2013 in Lake Hughes, California. Registration opens on January 4, 2013. The Victory Junction session will be held Thursday October 17-Sunday October 20, 2013 in Randleman, NC. Registration will open on July 1, 2013. Each of these programs are offered totally free of charge to eligible families.

Families response to what Inhibitor Family Camp means to them include:

“I loved all the activities. Lots of things to do. The boys had a wonderful time. I have no
complaints except we didn’t want to leave! Thank you!”

“Hanging with the other kids and connecting with them through similar experiences.”

“This program has been fully instrumental to my family in helping us deal with hemophilia and inhibitors.”

For additional information,
please call Comprehensive Health Education Services at 781-878-8561.

Click below to view Comprehensive Health Education
Services’  Inhibitor Family Camp Brochure http://attachment.benchmarkemail.com/c51644/2013_Inhibitor_Family_Camp.pdf