university of pittsburgh nkf summit 2014 staff …€¦ · 412-692-412-7-15213 nkf summit 2014...
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Kellee Bornemann is our newest team member. Kellee has
played an integral role as our study has been coming to a close.
You may have reached Kellee when you called our study team.
She has been a great help with study tasks, data management,
and participant contact. Kellee has significant experience with
coordinating studies in the VA Pittsburgh Healthcare System.
Kellee is a native of the Pocono Mountains in northeastern PA.
She is currently obtaining her Masters of Public Health at the
University of Pittsburgh Graduate School of Public Health. When
she’s not busy with school work, Kellee enjoys cooking, art, and
shopping. Kellee is a terrific baker and loves perfecting recipes.
We are pleased to have Kellee with us and grateful for her help.
She has a great attention to detail and pleasant disposition. She
keeps up with our fast pace and always does it with a smile. We
hope you have enjoyed your encounters with Kellee as much as
we have enjoyed working with her.
STAFF SPOTLIGHT The Study Team
University of Pittsburgh Center for Research on Healthcare
Kidney Transplant Research
230 McKee Place, Suite 600
Pittsburgh, PA 15213
Kellee Bornemann Project Coordinator
Emilee Kohan Project Coordinator
Dr. Ronald Shapiro Clinical Coinvestigator
Dr. Larissa Myaskovsky Principal Investigator
WINTER 2014 UPDATE Kidney Transplant Decision Making Study
March is National Kidney Month! As a way to fo-
cus the nation’s attention on kidney health, the
National Kidney Foundation is hosting a Kidney
Patient Summit. The summit will take place
March 3-5, 2014 in Washington DC. Chronic kid-
ney disease patients, dialysis patients, caregivers,
transplant recipients, living kidney donors, and
their families will travel to the capital to speak to
Congress about the importance of awareness,
prevention and treatment of kidney disease. Ad-
vocates will be asked to share their stories about
their experiences with kidney disease, donation,
or transplant. To find out how you can participate
in National Kidney Month from home, please
email [email protected].
We welcome your comments,
suggestions, or questions.
E-mail: [email protected]
Call: 412-692-4856 412-647-0450
MAIL: Kidney Transplant Research c/o Dr. Larissa Myaskovsky
University of Pittsburgh
Center for Research on
Health Care
230 McKee Place, Suite 600
Pittsburgh, PA 15213
NKF SUMMIT 2014
WINTER 2014 UPDATE
Kidney Transplant
Decision Making Study
UNIVERSITY OF PITTSBURGH
Hello and belated Happy New Year from the kidney trans-plant research team! Now that 2013 is behind us and 2014 is in full swing, we want to wish the best for you and yours in the coming year. We also want to thank you for your continued help with our research.
Our latest issue of this newsletter was bittersweet for us to write, because it is also our final installment. After more than 4 years working on this project, our work is coming to an end. We are so grateful to all of our partici-pants for making this research possible and for helping countless patients in the future with the information you have provided us. As always, in this semi-annual newsletter, we include an update of our project, a kidney-friendly recipe, updates from the National Kidney Foundation, and information about upcoming events, programs, and resources that may be of interest to you and your loved ones. We hope you enjoy the final installment of our newsletter. The purpose of our study was to determine how patients’ beliefs, experiences, and attitudes are related to receiving a living or deceased donor kidney transplant. Your partici-pation helped us to understand how people make deci-sions about their treatment options for kidney transplan-tation. Your responses also helped us to determine how to tailor interventions that may help to increase the rate of kidney transplantation in people with end-stage kidney disease. We reached our study recruitment goal in the fall of 2012, with a total of 1224 participants enrolled in our study. Of that number, 1,152 participants have completed their first interview. Of those 1,152 participants, 923 have
RESEARCH STUDY
PROGRESS
A BIANNUAL PUBLICATION OF DR. LARISSA MYASKOVSKY AND THE UNIVERSITY OF PITTSBURGH KIDNEY TRANSPLANT RESEARCH TEAM
completed their second interview and 134 have com-pleted their third and final interview. So far, 38 percent of the participants in our study are women and 62 per-cent are men. The average age of study participants is 55 years old, with an overall range in age of 18–89. In addition to presentations in the spring of last year at the annual meeting of the American Transplant Con-gress in Seattle, WA on May 21, 2013, Dr. Myaskovsky and her team have shared preliminary results of this work at the Academy Health Annual Research Meeting in Baltimore, MD. Presentations are also scheduled and/or planned for the University of New Mexico, the Uni-versity of Pittsburgh, the semi-annual meeting of the Center for Organ Recovery and Education, the local or-gan procurement organization in Allegheny County, and the World Transplant Congress in San Francisco, CA. Final data analyses and write up are currently underway and the first of several manuscripts based on this work will be submitted for publication in early 2014. Sincerely, Dr. Larissa Myaskovsky and the Kidney Transplant Research Team
mailto:[email protected]
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The National Kidney Foundation’s Kidney Walk is part of a community
fundraiser to support the prevention and early detection of kidney disease
and to raise awareness of the need for organ donation. Walkers include
kidney patients, transplant recipients, organ donors, families, friends, sup-
porters, and local businesses. The contributions will benefit programs and
services for kidney patients, transplant recipients, organ donors, and their
families. Kidney Walks take place in communities all over the country,
with over 100 events each year. To become involved in future kidney
walks by registering as an individual walker or team, volunteering, or
donating, visit http://walk.kidney.org.
The 12th annual Pittsburgh Kidney Walk took place on Sunday, November 3, 2013. Although it was a very cold
morning, nearly 2,000 gathered at the Pittsburgh Zoo & PPG Aquarium in support of the millions living with chronic
kidney disease. This was the Pittsburgh kidney walk’s largest turn out yet! Our own Dr. Larissa Myaskovsky, the PI
for the Kidney Transplant Decision Making Study, and her family attended this year's annual Kidney Walk and held
the sign for Team UPMC. Dr. Ron Shapiro of the VA Pittsburgh and the Starzl Transplant Institute and his wife, Mary,
were there as well. So far, the walk has raised nearly $190,000 of its $215,000 fundraising goal, which is also the
highest amount ever raised in Pittsburgh.
UNIVERSITY OF PITTSBURGH
KIDNEY WALK 2013
The Transplant Games of America will take
place July 11-15 2014 in Houston, TX. The
Donate Life organization has recently part-
nered with the Transplant Games of America
to promote and increase donation of organ, eye, and tissue
across the country. The theme for 2014 will be “Celebrating the
Gift of Life-A Legacy Lives On.” The festival is a multi-sport event
for patients who are transplant recipients and those who have
given the gift of life with a live donation. The games host a varie-
ty of interesting events that range from a 5K race/walk, to a ball-
room dancing competition, to a trivia contest. This event cele-
brates the gift of life and the lives of donors and recipients. For
more information on this year’s festivities, please visit http://
www.transplantgamesof america.org/. Also, find the TGA on
Facebook at https://www.facebook.com/pages/Transplant-
Games-of-America/218395054888480 for current updates and
information.
Transplant Games of America
Dialysis Cartoon by Peter Quaife, the Lighter Side of Dialysis. For more information and dialysis humor, please visit: http://kidneykorner.com/AK/Comics.html.
World Kidney Day is celebrated annually
on the second Thursday in March. The
global event is a joint International Society of Nephrology and Inter-
national Federation of Kidney Foundations initiative that aims to
foster public awareness of kidney disease and promote overall kid-
ney health worldwide. World Kidney Day 2014 will take place on
March 13, 2014, marking the 9th annual WKD. The campaign theme
for 2014 is “Think about your kidneys.” Over 100 countries partici-
pated in last year’s event which included street events and fairs,
public screenings, symposiums, publications, videos, photos, and
media coverage around the world. To find more information about
World Kidney Day 2014 and how to become involved, to receive
promotion materials, or to participate in registered events in the
future, please visit http://www.worldkidneyday.org/.
WINTER 2014 UPDATE Kidney Transplant Decision Making Study
Resource List
WORLD KIDNEY DAY
Get involved with NKF:
http://www.kidney.org/about/membership.cfm
Healthy recipes at the NKF Kidney Kitchen:
http://www.kidney.org/patients/kidneykitchen/
Find your local NKF chapter:
http://www.kidney.org/about/offices.cfm
Browse useful information with UNOS Donate Life:
http://www.unos.org/
Find facts at the American Kidney Fund:
http://www.kidneyfund.org/advocacy/kidney-disease-
resources-and-information/
Visit Just Harvest for help with life’s challenges:
http://www.justharvest.org/
Please see prior newsletters for more resources. Please
visit our study blog:
http:kidneytransplantresearchstudy.wordpress.com/
NKF KIDNEY KITCHEN RECIPE
Cupcake Recipe Yields: 24 cupcakes
3 Granny Smith apples, peeled, cored and diced 1/4 cup caramel flavored syrup - sugar free 1 yellow cake mix, sugar free 1/4 cup vegetable oil
CARAMEL APPLE CUPCAKES
Microwave diced apples for five to six minutes, until they are soft. Smash them with a potato masher and let cool to room temperature. In a mixing bowl, add cake mix, apples, caramel fla-vored syrup, eggs, oil and water. Mix on low for 1 minute and mix on medium-high for 2 minutes, scraping the bowl to make sure the batter is completely mixed. Fill 24 cup cake liners with 2/3 fill of batter and bake at 325 F for 20 to 30 minutes. Use a toothpick to stick in the middle to check for doneness, if the toothpick comes out clean, the cupcakes are baked.
Frosting Recipe
1/2 cup water
8 oz of Sugar Free Vanilla Frosting
2 tablespoons plus 1 1/2 teaspoons of caramel fla-
vored syrup, sugar free
4 1/2 oz Jellybeans
Beat frosting with caramel flavoring. Frost cup-
cakes and sprinkle the tops with jellybeans.
Please consult your physician or dietician before
making any changes to your diet. This recipe was
submitted by CKD patient and chef Duane Sun-
wold, and may be appropriate for those on dialy-
sis and those with diabetes or a kidney transplant.
Analysis: Calories 183, total fat 7.3 g, saturated fat
1.3 g, monounsaturated fat 2.3 g, polyunsaturated
fat 2.7 g, cholesterol 27 mg, calcium 34 mg, sodium
174.5 mg, phosphorus 81.7 mg, potassium 45.6
mg, total carbohydrates 29.5g, dietary fiber 1.4g,
sugar 5.4g, protein 1.8 g.
http://walk.kidney.orghttp://www.transplantgamesofamerica.org/http://www.transplantgamesofamerica.org/https://www.facebook.com/pages/Transplant-Games-of-America/218395054888480https://www.facebook.com/pages/Transplant-Games-of-America/218395054888480http://www.worldkidneyday.org/http://www.kidney.org/about/membership.cfmhttp://www.kidney.org/patients/kidneykitchen/http://www.kidney.org/about/offices.cfmhttp://www.unos.org/http://www.kidneyfund.org/advocacy/kidney-disease-resources-and-information/http://www.kidneyfund.org/advocacy/kidney-disease-resources-and-information/http://www.justharvest.org/http://kidneytransplantresearchstudy.wordpress.com/