Transplant
Coming up on Saturday, September 26th CareDx is hosting the Allocare Transplant Festival, a fun, interactive, virtual event meant to bring together members of the transplant community during this difficult period. The event will take place from 12 – 3 p.m. ET and will feature many different activities with guests from all over the transplant community.
The festival has a full agenda of events and activities, as well as multiple contests for attendees to participate in before and during the festival! Here is a full list of the live festival agenda, as well as the pre-event contests:
Pre-Event Contests (submissions due by September 19th)
- Twitter “My Transplant Story” In 280 characters or less, tell us how the gift of organ donation changed your life for a chance to win some great prizes!
- Favorite Recipe Contest Share your go-to recipe for a chance to win a prize and have your recipe demonstrated by our guest celebrity chef!
- Talent Show entries Submit a video of your special talent! Winners will be revealed during the festival.
- Transplant Community Photo Wall Mosaic Submit a photo and be a part of the Photo Wall Mosaic that will be presented live by Peter Maag
To enter, click on the registration link below!
Live Festival Agenda
- Community Trivia Challenge Host: Amanda Nicastro – comedian and organ donor
- Talent Show Judges: Angelica Hale, America’s Got Talent runner up and kidney transplant recipient; Dorry Segev, transplant surgeon at JHU; and Merle Zuel, MerleJam founder and heart transplant recipient
- Cooking Demonstration Celebrity chef will demonstrate a version of a winning recipe, with three home chefs joining in live
- The Engaged Patient Patient Panel moderated by Osama Gaber, transplant surgeon at Houston Methodist and incoming ASTS president
- Transplant Life with Sports and Fitness Professional Athlete Panel with David Ayres, Emergency Goalie Carolina Hurricanes and transplant recipient; John Brockington, NFL – Packers and transplant recipient; and Sean Elliot, NBA – Spurs and transplant recipient.
- My Transplant Story Winners
- Photo Wall Mosaic Reveal Presented by Peter Maag
- Get Moving: Short home workout clips with professional transplant athletes
So what is CareDx? CareDx is a transplant focused company centered around providing healthcare solutions for transplant patients and caregivers both pre- and post- transplant journey. It is committed to improving transplant patient outcomes through innovative testing and is the leading partner in medicine for transplant patients.
Gift of Life Howie’s House is so excited to be partnering with CareDx for this special event. For more information and where to register, visit this website: https://bit.ly/caredxregistration
We hope to see you there!
Sunny skies and great friends coming together to support transplant families made this year’s Kidney Open Golf Outing a huge success! Thanks to our generous supporters, we were able to raise over $116,000 for Gift of Life Howie’s House!
The funds raised at this year’s Golf Outing will help us subsidize the cost of staying at the Howie’s House to keep our room fees low, and cover the costs of families who cannot afford to pay the nightly fee, making sure we never have to turn away a family due to inability to pay.
This year’s outing looked a little different than years prior, as we implemented many health and safety guidelines throughout the day and adapted the event to limit large social gatherings. Despite the obstacles, we were still able to raise much-needed funds for the Howie’s House so we can continue to support our mission of providing a “home away from home” for families undergoing the transplant journey.
As our guest speaker and past Howie’s House guest, Denise Hobbie, said during the event, “On a very tough and arduous journey, the Gift of Life Howie’s House was truly a welcome respite to me and my family.”
Whether you joined us out on the course, sponsored part of the outing, or volunteered to support our staff, we thank you for helping us provide for families like Denise’s.
We hope that you will join us next year for our 17th Annual Kidney Golf Outing!
We’d like to give a special thank you to all of our sponsors of this event! Thanks to your support, our mission to support transplant families remains strong.
2020 Kidney Open Sponsors
Golf Carts
Main Line Health
Shot Gun Start and Dinner
Bridge to Life, Ltd
Double Eagle
CareDX
Cornerstone Asset Management
CSL Behring
MTF Biologics
Nora – Nationwide Organ Recovery Transport Alliance
Quick Courier Service
VRL Eurofins
Eagle
Independence Blue Cross
Lions Eye Bank of the Delaware Valley
Mohan USA
Organ Recovery Systems, INC.
Quick Specialized Healthcare Logistics
Sinnott Executive Consulting
Birdie Sponsors
Highmark Blue Cross Shield Delaware
Howard M. Nathan
Apparel
Community Tissues Service
Lunch
Meridian Bank
Registration
Baker Tilly Virchow Krause, LLP
Course Refreshment Stations
Lincoln Financial Group
Warner Benefits / HRAdministrators
Coffee Station
Lincoln Financial Group
Practice Range
Einstein Healthcare Network
Signage Sponsor
Garrison
Putting Contest
Gillespie Electric, Inc.
Closest to the Pin Contest
The Arthur Jackson Co.
Longest Drive Contest
Wye Realty Advisors
Straightest Drive Contest
Transplant Alliance Foundation
Hole-In-One Car Sponsor
Scott Honda of West Chester
Hole Sponsors
Affinity Wealth Management
Dr. Linda Barrasse
C Change Surgical
Gallagher Benefit Services
Kimmel, Carter, Roman, Peltz & O’Neill
Miller Pipeline
Premier Orthopedics
Tozour Energy
Venture Jets
Walker Lodge #306
Wohlsen Construction
In August of 2014, Carol McCloud’s son, Ryan, became an organ donor. At 20 years old, Ryan saved four lives. Until her son’s passing, Carol and her family didn’t know much about donation, but she says it’s been a blessing to her and her family, helping them get through her son’s sudden passing.
The McCloud’s are residents of Fishtown, a neighborhood just north of Gift of Life Donor Program and the Howie’s House, so it was easy for Carol to begin volunteering with our organization. She began with the Donor Dash, and soon after, she visited the Gift of Life website to learn about other volunteer opportunities. Carol also noticed signs on the highway for the Howie’s House.
After some thought, she and her family decided that on the first anniversary of her son’s passing, they’d do a food drive for the Howie’s House. They’ve been doing one ever since.
The McCloud family fills up their entire minivan with food and other household supplies for guests here at the Howie’s House. Family, friends, and small businesses in the neighborhood like grocery stores and restaurants all contribute; relatives and friends also advertise at work. “A big chain of people have made this drive so successful,” Carol says.
The before and after care transplant patients and their families receive at the Howie’s House motivates Carol to keep giving. “Being able to help others the way people helped my son is important to me,” she says. “Volunteering and spending time at the Howie’s House allows me to see first-hand what they do for families and allows me to celebrate my son and spread his story.”
Carol and her family also volunteer as Home Cook Heroes on or around Ryan’s birthday.
Thank you, McCloud family, for selflessly supporting our mission and transplant families!
Gift of Life Howie’s House would like to welcome the newest member of the Gift of Life Howie’s House Advisory Board, Bill Soloway! Bill is a heart transplant recipient, receiving his precious gift of life in June of 2015 thanks to a selfless donor. He is well known for his community advocacy, his relationship building, and his endless energy. “You have one life to live and eight lives to give,” he says. “Become an organ donor. My life depended on it.”
In the mid-1990s, Bill was diagnosed with hypertrophic cardiomyopathy, an inherited condition where heart muscle cells become enlarged, altering the structure and function of the heart. Bill lost his 27-year old brother to the same condition.
Before his transplant journey, Bill loved cycling. During his post-transplant recovery, Bill was inspired by stories he heard about the Transplant Games, a multi-sport event for individuals who have undergone life-saving transplant surgeries. Just 10 weeks after his transplant, Bill got back on his bike. This year, Bill will compete in both the Transplant Games’ 5K and 20K bicycle races, as well as in badminton, volleyball, and pickleball.
Bill honors his donor and donor family through his work in the community including service as a Gift of Life Ambassador, HUP Heart Transplant Support Group member, Team Philadelphia member, TRIO Philadelphia Chapter Board member, UNOS Ambassador, Masonic Blood+Organ Donor Board member, and a Help Hope Live committee member. Bill is also an Eagle Scout.
When asked about the Howie’s House, Bill says: “Being a heart transplant recipient, I understand the many trials and tribulations that families go through in the transplant process. To have a place that is a safe port for transplant families to anchor in after a long day at the hospital means an awful lot, especially to those families that are not familiar with the Philadelphia area. I believe in everything the Gift of Life Howie’s House stands for and am honored to be a part of such an amazing organization.”
Gift of Life Howie’s House is proud to spotlight members of the Legacy Society who have made planned gifts to support the future of the House.
“It takes a lot to keep the Gift of Life Howie’s House running, and to be able to provide rooms for people who otherwise wouldn’t be able to have a place to stay. I think it’s very important that this continue.” – Jean Jones
Jean and Sam Jones are passionate supporters of the Gift of Life Howie’s House.
Jean Jones vividly remembers what it was like spending an entire summer living in a hotel in Washington, D.C. after her son’s organ transplant in 2006, because there was no transplant house. “There were a lot of people that we got to know – some from Philadelphia – who really didn’t have any place to stay,” says Jean, who is from New Jersey. “It was very difficult for them.”
After her son’s successful transplant, Jean learned about our plans for the Howie’s House and the rest, as they say, is history. “When I heard about the Gift of Life Howie’s House, I thought, ‘Oh my gosh, that is just wonderful.’ So I got involved and then I signed up to be a volunteer.” In addition to Jean’s role as a volunteer, she and her husband, Sam, are generous supporters and great friends of the House. They also recently joined our Legacy Society.
Having experienced first-hand the plight of transplant families, Jean is especially interested in helping the Gift of Life Howie’s House fill the need for affordable lodging and services. “It is just wonderful that families are able to stay a night, or as many nights as they need to, have transportation to the hospital, have meals, and help from a social worker – anything they need. That’s so much better than just being on your own in a big city and trying to find a place to stay – and having no one to talk to or help you.” Jean explains that making provisions to include the House in their will is their way of continuing to help long after they are gone. “When you put it in your will, you know it’s going to go where you want it to go, to what you are passionate about.”
Jean and Sam support a number of charitable organizations, especially those that directly serve people. We are very grateful that the Gift of Life Howie’s House is among them. “It takes a lot to keep the House running, and to be able to provide rooms for people who otherwise wouldn’t be able to have a place to stay. I think it’s very important that this continue. The more I can help them to do that, the better.”
Gift of Life Howie’s House invites you to join Sam and Jean Jones in supporting the future of the House by becoming a member the Legacy Society.
Joining the Legacy Society is easy. Simply include the language below in your will directing a charitable gift to the Gift of Life Howie’s House and then let the House know about it. Such a bequest can take many forms including cash, stocks, or other gifts of value. A future gift made through a bequest may provide tax advantages that benefit you, your estate and your beneficiaries.
When you become a Legacy Society member, your gift will be acknowledged right away and you will be enrolled in various recognition activities, including an invitation to the yearly President’s Appreciation Reception. Your name will also be published in the Gift of Life Howie’s House’s quarterly newsletter and on its website and, for members who make bequests of $10,000 or more, your name will also be added to a special Legacy Society Wall being built in the Howie’s House living room.
When you make a bequest to the Gift of Life Howie’s House, you will help to ensure a “home away from home” for the transplant families who will need support for years to come. And, you will have the satisfaction of knowing that your deeply held values will live on through the loving care the House provides.
Sample language for making a bequest: “I give, devise, and bequeath to Gift of Life Howie’s House, a non-profit 501(c)(3) charitable organization located at 401 Callowhill Street, Philadelphia, PA 19123, EIN 26-0585694, or its successor-in-interest, [insert dollar amount or percentage] for its unrestricted use and purposes.”
Click here for more information about the Howie’s House and planned giving options and to download a Legacy Society Membership form.
As with any tax-deductible gift, you should consult with your tax advisor to determine the degree to which your gift may result in tax advantages to you, your estate, and your beneficiaries.
It was 33 years ago when Cindi and Russell Westendorf met at the Hospital of the University of Pennsylvania (HUP), purely by coincidence. Now, happily married with 3 grown children, they found themselves back at the same hospital, but this time for Russell to receive a life-saving lung transplant.
Prior to Russell and Cindi meeting, Cindi was a graduate student in Philadelphia studying counseling and creative arts therapy. Russell had gotten into a very serious motorcycle accident and was transferred to HUP, a hospital close by where Cindi was studying, to receive bone grafts. He stayed there for many months during his recovery. Cindi’s family, who knew Russell’s family, recommended she stop by his hospital room for a visit as she was already in the area – and they have been together ever since.
“I think one of my biggest reliefs was finding the Gift of Life Howie’s House, to be honest with you. That is when my heart felt better because I knew my wife was going to be okay.” — Russell Westendorf
After they got married, they settled in Colts Neck, NJ and had three sons. Russell worked as a stone and tile setter. A union man at heart, Russell loved his job, especially the fact that his hours allowed him to be home with his kids and his wife. However, it was very tough on his physical health and Russell developed a serious lung disease. Surrounded constantly by dust, insulation, and other hazardous materials, “it physically beat me up. Lung disease was part of what I did. It took some getting used to, but slowly my health got worse until suddenly I’m using 17 percent of my lung capacity, and started to have to use the oxygen.”
She is My Rock
Because of his illness, Russell was listed for a lung transplant in 2014. All too familiar with caregiving and support, Cindi, an art and trauma therapist, has been right by his side throughout his entire transplant journey. Russell could not be more grateful for their partnership, “She is my rock and probably the most giving person I’ve ever met in my life.”
After two years on the transplant list, the couple was getting into bed one night about a week before Christmas when they received the call that donor lungs were available. They rushed to Philadelphia, over 70 miles from their home at 2:30 in the morning and, upon arrival, Russell went right into surgery. He awoke on December 19th with the gift of life – a new pair of working lungs – thanks to someone’s selfless decision to say yes to donation.
After the transplant surgery, Cindi was able to stay at Gift of Life Howie’s House while her husband was in recovery. Russell said, “I think one of my biggest reliefs was finding the Howie’s House, to be honest with you. That is when my heartfelt better because I knew my wife was going to be okay.”
On Christmas morning, a few days after the surgery, the doctors moved Russell back into the ICU due to a complication. Cindi, who was staying at the House, got a call from the hospital explaining the situation. “I got up, so startled. I didn’t even think about it being Christmas but I woke up, got dressed, got myself together and opened the door and there were all these gifts [from the staff]. It was really special; it’s just a little thing like that that made me feel like we were in the right place at the right time.”
Recovery at Gift of Life Howie’s House
Russell recovered from the complication and was released from the hospital a few weeks later. He was then transferred to the Gift of Life Howie’s House to continue his recovery. After hearing so many wonderful things about the House from his wife, he had high expectations upon arriving: “When I got here, I was totally blown away. Everybody here is just wonderful, very supportive. The thoughtfulness that went into planning this place and the relief of having meals is unbelievable. And I love the fact that you can sit around and share experiences with other transplant patients.”
Though the couple remarked on many wonderful aspects of the House, Russell’s favorite, in particular, was the Home Cook Heroes program. This volunteer-based program invites people from all over the community to come to the House to prepare a home-cooked meal for Gift of Life Howie’s House guests. Russell especially enjoyed the variety of nutritious meals, “It’s all been fabulous—the whole concept that people do this for us is so nice. It has really helped me open up my pallet and try different things that I normally wouldn’t,” said Russell. “I wouldn’t even eat salad at home and now I am trying new things, like guacamole. It’s given me a new lease on life – healthy eating is important for my recovery.”
Russell and Cindi are thrilled to have a place where their sons can come for visits, a place where they can meet new families and volunteers and continue trying new foods. But above all, they are relieved to have a place where they can relax and work on getting Russell’s physical health back to normal. Russell says, now more than ever, they will both continue to live by their personal motto: “Be Positive—that’s my blood type.”
“The Howie’s House is a very special place for everyone. Not just the guests, but the volunteers too.”
Most donor families, while they may correspond with their loved one’s recipients, don’t often get the opportunity to meet the recipients in person. When a donor family member does have the opportunity to meet a transplant recipient, even if the gift did not come from their own loved one, these interactions can be very meaningful and of much comfort to them. This is the feeling members of Hearts of Gold get when they come to the Howie’s House. Hearts of Gold is a donor family support volunteer group run through Gift of Life Donor Program, and its members meet regularly at Gift of Life Howie’s House to participate in the Home Cook Heroes program, where they can interact with transplant recipients and families.
Diane Milbourne, Hearts of Gold team leader, explains, “Being at the Howie’s House gives us an opportunity to talk to transplant recipients and those who are waiting for a life-saving transplant. It is probably the first time that potential transplant recipients and their families come into direct contact with donor families. It is important for both of these groups to interact, to hear each other’s stories. We are happy to share the story of our loved one and reassure people that the gifts they are receiving are done so because our loved ones wanted to give the greatest gift of all, the gift of life.”
Having served their first meal just a few months after the Howie’s House opened in July 2011, Hearts of Gold has since returned three times every year to prepare dinner or brunch for transplant families. “We remember when we first started cooking, their weren’t too many guests in the House, now there is always a full House. The Howie’s House is truly a blessing for each family who is coming to Philadelphia for their medical needs.”
Hearts of Gold aims to serve meals that bring comfort to the guests staying at the House. Because all of the members of this team have had loved ones in the hospital, they relate to the stress and anxiety that caregivers can feel on a daily basis. The team explains, “At that most stressful time of our lives, we were not interested in eating, but knew it was necessary. We know it is the same for the guests staying at the Howie’s House after a long day at the hospital. Comfort foods are just one small way for our group to help them.”
From chicken pot pies to casseroles and soup, the group always tries to make a different comfort food. However, nothing can top the popularity of their trademark meal, “Breakfast for Dinner.” Serving the guests eggs, bacon, sausage and home fries, Hearts of Gold ties it all together by making their special heart-shaped pancakes!
The group volunteers at the Howie’s House to remember, honor and celebrate their loved ones. The members find healing through the Home Cook Heroes program and other opportunities with Gift of Life Donor Program. “The Gift of Life organization has been there for each donor family at our worst possible time. Physical activities, like cooking together as a group, releases the endorphins in our brains, which makes us look at life in a more positive way,” explains one of the Hearts of Gold members.
Interested in getting experiencing the benefits of the Home Cook Heroes program for yourself? Gather your friends, family or coworkers together and participate in this heart-warming program which provides an essential means of healthy support for transplant families staying at the Howie’s House. Dinners are served every night of the week, along with brunch on the weekends. These meals afford our tired guests with the opportunity to decompress, share their experiences and find solace in a communal setting. Volunteers donate their time and the food, and get to see the impact of their efforts on the families they serve, all the while learning the importance of supporting organ donation in their own lives. Come try it out! Click here to learn more about the Home Cook Heroes Program.
by: Kirsten Diegel
- Take a Lap – Walk around the whole cafeteria to see the selection. Cafeterias may change the menu daily, and sometimes they have seasonal specials. As you walk around, take note of which options fit your nutrition goals. For instance, are you trying to lose, gain, or maintain your weight? What did your dietitian recommend?
- Food for Thought – Although the staff works hard to prepare foods that are safe to eat, transplant patients need to be especially careful. This is one reason why dietitians spend time educating transplant patients before discharge. Examples of foods to avoid include deli meats and cheeses, salad bars, raw nuts and sprouts, etc. Refer to FDA’s list about food safety as a refresher. If needed, contact your dietitian for an additional copy of Food Safety for Transplant Patients.
- Balance Your Plate – Imagine your plate is divided into 4 sections; fruit, vegetable, protein, and whole grains. Aim to have a plate that has food in each section. Of course, this can be a challenge. At a minimum, try to pair a protein (chicken, turkey, fish, beef, peanut butter, milk, etc.) with at least one other food group (fruit, vegetable, or grain). Having a serving of protein will help keep you feeling full!
- Sip on This – Beverages can boost your calorie intake and weight, which may be a benefit for some but not so great for others. If you are trying to gain weight, high calorie beverages/fluids, such as whole milk, chocolate milk, fruit/vegetable combination juices, protein shakes are options to consider. On the other hand, if your goal is to lose or maintain your weight, water, unsweetened beverages, and low-fat or skim milk is your best bet. Remember: Canned beverages (ex. soda) are not recommended for transplant patients for food safety purposes.
- Keen on Clean – Before eating or drinking anything that you have purchased, take a second to use hand sanitizer to clean your hands, wipe your utensils with a napkin, and wash your fruit. That apple may have been washed in the kitchen, but who knows how many people picked it up before you selected it. During your meal, place your utensil on a napkin or on your plate rather than setting it directly on the table between bites.
About Kristen:
Kirsten Diegel graduated from University of Delaware and completed her Dietetic Internship through ARAMARK in Philadelphia. She is currently pursuing her Master of Science in Health Promotion at the University of Delaware while working as a Clinical Dietitian at Temple University Hospital. Kirsten has worked within the hospital system for 4 years and has been a part of the Lung Transplant Program, one of the oldest and most experienced centers in the region, for the last 3 years. Kirsten is an active runner who is working towards running the New York Marathon in 2017. Kirsten enjoys eating soy yogurt with fruit and almonds/walnuts as a snack to help fuel her workouts, although she will never say no to anything with chocolate.
“The Home Cook Heroes program gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.” – Greg Dommel, Voya Financial
As the clock approaches 6 o’clock, inviting aromas of roasted pork tenderloin, breaded tilapia and berry cobbler beckon guests into the dining room. Even after three main courses, lots of sides and plenty of desserts, there are rarely any leftovers from this particular group’s Home Cook Hero meal!
Since its inception, the Voya Financial team has been nothing but committed. Greg Dommel, their team leader, created the Home Cook Heroes program through his company. Like many employers, Voya Financial strongly encourages staff to get involved in the community, offering incentives to encourage them to take advantage of volunteer opportunities, including 40 hours of paid time each year to volunteer.
The Voya Community Partners initiative presents several opportunities to get involved throughout the year. All opportunities are selected by employee nominations in an effort to interact with organizations and causes important to its employees. Because Gift of Life Howie’s House was near and dear to Greg’s heart, he has been ensuring his company’s involvement in our programs since 2011, when the Howie’s House first opened.
Greg has a close personal connection transplantation, as one of his own family members needed a heart transplant in the early 2000s. He mentioned commuting back and forth from Lancaster to the Philadelphia area for transplant care was a strain on his family. He understands the important need of the Howie’s House and is thankful that families traveling g to Philadelphia for transplant care nowadays have a warm and inviting place to stay.
When the opportunity arose, there was no question in Greg’s mind about where he wanted to direct his time in volunteering. He quickly formed the Voya Financials Home Cook Hero team and was excited to hit the kitchen.
The team’s natural talent to “rebrand” has not gone unnoticed by Howie’s House guests and staff! Greg recalls one day the team was scheduled to volunteer at the Howie’s House, “Mark and I finished off our grocery shopping with a diverse range of desserts including a Mixed Berry Pie with Lattice Top. During the car ride from West Chester to the Howie’s House, contents shifted. When we unpacked our groceries, the pie was still sealed and fresh – but was no longer anything close to being pie-shaped.” Being fast on his feet and thinking with marketing savvy, Mark took the object formerly known as a pie and placed it in a slow cooker. “Just like that, our pie was rebranded as ‘Mixed Berry Cobbler.’ Interestingly, our ‘cobbler’ was one of the most popular items that night!”
Volunteering at the Howie’s House means a lot to the entire Voya Financials team, even beyond having a personal connection to transplant. “It gives us the opportunity to connect directly with the people we help serve – in real time. Every time we’ve been there, the guests – and staff – have been so grateful for what we do.”
For other corporate companies looking to start a team, figuring out where to start can be a challenge. Greg sheds some light on the issue: “I quickly learned to surround myself with people who enjoy cooking. Initially, most of our Home Cook Heroes team came from my Marketing group, but soon expanded to other departments. We have a revolving door of frequent volunteer cooks, but our lead chef, Mark Siciliano, helps coordinate the planning and execution of our meals.”
The Home Cook Heroes program offers a unique and engaging opportunity to get involved in both the local and the transplant community. It provides a chance to engage directly with the people you are helping. Working with your coworkers, family, friends or classmates, groups of up to 10 people can prepare meals (on or off site) and serve them to our guests. Just bring yourself and your food and we will provide everything else in our modern, fully-equipped kitchen. For more information about the Home Cook Heroes program or to sign up, please click here.
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