Volunteer
Philadelphia’s seven transplant centers draw patients from across the country. Along with them come families uprooted from their homes. There’s a special place where many stay called Howie’s House.
Gina Adams and her daughter Kemiyah of Harrisburg, Pa., were recent guests. They told us how their transplant journey started in Harrisburg.
“I was in my room, Kemiyah recalls.
She was listening to music the day before Thanksgiving, when out of the blue…
“I remember kind of like falling, like off of the bed,” she says.
“She was lying on the floor, crying,” Gina says.
“The words that’s coming out of her mouth just doesn’t make sense,” she explains.
Gina didn’t know till the next day at a hospital that her 15-year-old daughter was having a stroke.
“There was a blood clot on her brain,” she says of her surprise looking at her daughter’s CT scan.
A clot brought on by heart failure.
Within hours, Gina, Kemiyah, and brother Kane left Harrisburg for Children’s Hospital, where doctors said Kemiyah needed a new heart. For Gina, 100 miles from home, Howie’s House became an oasis. It’s the brainchild, and named after, former Gift of Life CEO Howard Nathan, inspired by out-of-town families he and his mother met when his sister got a liver transplant.
“That struck me at that moment, that part of the transplant process is that families have to be cared for,” says the Howie’s House founder.
“In general, hospitals don’t have hospitality for family members,” he adds.
Since opening in 2011, Howie’s House has provided 100,000 nights for families awaiting transplants or follow-up visits.
“We’re thankful for them because we’re able to have something to eat every day and somewhere to sleep,” Gina says.
Dinners are made by the Home Cook Heroes.
“Every night at 6 o’clock, there is a home-cooked meal by volunteers in our great kitchen,” Nathan says.
Transplant families meet, share stories, and support each other there. There’s also an exercise room, a game room, and organized activities. Now back in Harrisburg with a new heart, Kemiyah made a happy return to high school. “Without that gift she wouldn’t be able to attend school,” Gina says gratefully. Howie’s House is full almost every night, so someday it may have to be expanded. But right now, the Gift of Life is focused on new organ donors.
If you haven’t signed up as a donor, it only takes a few minutes.
As we wrap up #NationalCaregiversMonth, we’d like to continue the theme of giving thanks by sharing this heartwarming quote from Dana Nelson, a past guest and transplant recipient, about his wife and caregiver, Donna.
“Donna is very important to my transplant journey; she keeps me grounded and focused. She puts up with my mood swings, comforts me when I’m feeling down, she handles problems with insurance, and makes sure I keep my appointments straight. We have been married for almost 25 years, and we never thought our lives would change in an instant. She has been strong and courageous throughout this whole rollercoaster of a ride. I wouldn’t want anyone else by my side, she’s the best.”
Please shout-out a special caregiver below to show them how thankful you are!
Last weekend, our friends over at @beeablessingnj hosted their annual Friends for Life fundraiser at the Collingswood Grand Ballroom and it was a huge hit! The theme was Lights Camera Action and attendees came dressed for the occasion in various movie and TV costumes. This special event raised funds for Gift of Life Howie’s House and the Bee a Blessing Scholarship fund.
The Clendining family continues Bee a Blessing, Inc. in memory of their two siblings, Jan and Michael, who were both transplant recipients, and in honor of their mother, Rose, who is a living donor. We are grateful to the family and their entire community for their continuous support of our mission!
Check out these photos on our instagram from the event and let us know which costume is your favorite!
https://www.instagram.com/p/DAE0gBPNNQY/
The staff at the MTF Edison, NJ location organized a collection of wish list items that were most needed at the House. President and CEO, Rick Hasz, drove the shuttle with members of the Development team, Abby Wells and Sara Cohen, to stuff the shuttle and bring it back to the House!
MTF Biologics is a valued partner of Gift of Life and also supports the House through the Kidney Open, the Donor Dash, and by regularly volunteering as Home Cook Heroes.
Caregiver Lifeline Spotlight
Transplant patients can live for many decades after transplantation, and with that remarkable success and progress comes a need for personalized and multidisciplinary medicine that includes specialized dermatology care.
Organ transplant recipients have an increased risk of skin cancer because immunosuppressive medications that prevent transplanted organs from being rejected by the body also lower the body’s natural defenses against skin cancer. The most common type of skin cancer in transplant patients is squamous cell carcinoma. The good news is that if detected early, with good care these cancers can be managed and very often cured.
Transplant Dermatologists have a simple goal – no one should die of skin cancer after a second chance at life through organ donation.
How high is the risk of skin cancer in transplant patients?
One in five people without a transplant will develop skin cancer by the age of 70. That story is dramatically different for transplant patients. Transplant patients are 65 times more likely to get squamous cell carcinoma than people without a transplant. They are 10 times more likely to get basal cell carcinoma, the least serious type of skin cancer. And transplant patients are 3 to 4 times more likely to develop melanoma, a potentially more serious type of skin cancer.
Skin cancers in transplant patients can grow quickly and have an increased risk of spreading. That’s why having a good relationship with a dermatologist who specializes in transplant dermatology can be game changing. Prompt and expert dermatologic care, which often includes a specialized type of surgery called Mohs surgery for certain skin cancers, is crucial for transplant patients.
What can transplant patients do about the increased risk of skin cancer?
The most important thing to do to lower the chance of skin cancer is sun protection – sunscreen, sun protective clothing, hats and sunglasses. Go ahead and make that hat fashion statement. As with many cancers, early detection of skin cancer is an important factor for preventing serious complications and death. Fortunately, most skin cancers can be easily treated in outpatient settings. The most common way to treat skin cancers in sensitive areas like the face is with Mohs Surgery. Mohs offers the highest cure rate and is the most precise way to treat skin cancer with the best cosmetic outcomes after surgery.
Good transplant dermatology care also offers treatments and medications to help lower the chance of developing skin cancer in the first place.
How often should you see a board-certified transplant dermatologist after an organ transplant?
What time and experience have proven is that routine dermatology care is an essential part of organ transplant care. Every transplant patient should be seen by a board-certified dermatologist around the time of transplantation, not because skin cancer is looming, but to start learning about skin cancer and what to look for.
After that, the frequency of dermatology visits will be based on each person’s unique situation. For some, visits are needed every few months. Fortunately most transplant patients do very well with visits to the dermatologist every 6 to 12 months.
If you are a transplant patient, talk to your transplant coordinators and physicians about finding a dermatologist who has an interest in transplant dermatology. You can also look for a transplant dermatologist through the International Immunosuppression & Transplant Skin Cancer Collaborative’s “Find a Transplant Dermatologist” tool.
Learn More About Transplant Dermatology
To learn more please watch Dr. Mark’s webinar presented through the Caregiver Lifeline Program
The annual Gift of Life Volunteer Recognition Ceremony, a day where we recognize the compassion, dedication, and hard work our volunteers bring to the Gift of Life community, took place on June 9th.
The Howie’s House had the opportunity to present four awards—the Home Cook Heroes Award, the Heartman Award, the Fundraising Ambassador Award, and the Guest Services Award. We are so incredibly proud and humbled by all of our volunteers and couldn’t have been happier to honor them in this special way.
We presented our Home Cook Heroes Award to New Vision Pioneers, who, led by Jody, have been volunteering with us since the spring of 2015. Since then, they have come in 36 times to date and have served nearly 2,000 meals to families who came a long way to receive treatment in Philadelphia.
The Heartman Award was given to Janice Schwartz Donahue. Janice has been volunteering with Gift of Life for over 20 years, first getting involved with her daughter, Jessica, who was a heart transplant recipient. Sadly, Jessica passed away, but Janice continues to carry on her legacy by coordinating Jessie’s Day with her other daughter, Laura, every year to give the gift of education to organ transplant recipients who are looking to attend college.
Janice is also a weekly volunteer at the Howie’s House. Every Wednesday, you’ll find her in the kitchen warmly welcoming and supporting the Home Cook Heroes volunteer groups, giving tours, setting up and cleaning up, or doing whatever is needed to make sure the kitchen operations are running smoothly.
She has become part of the Howie’s House “family” and we just love having her with us each week. To date, Janice has contributed over 900 hours of her time to supporting the Howie’s House!
This year, the 2018 Fundraising Ambassador Award, which recognizes a volunteer, group, or organization that has demonstrated exceptional leadership in coordinating, motivating, and successfully completing fundraising efforts for Gift of Life Howie’s House, was given to the Penkala Family.
In an effort to honor his son Paulie and raise awareness about organ and tissue donation, Paul Penkala, along with family and friends, hosts an annual golf tournament and graciously donates all of the money raised to Gift of Life Howie’s House.
In 2011, the family pledged $25,000 to underwrite the Howie’s House resident laundry room in their son’s name, because, as Paul put it, “Paulie was always particular about ironing his clothing.”
Even though they fulfilled this pledge a few years ago, the Penkalas continue to host their outing to support our Adopt-A-Family Program.
The Penkalas also volunteer in the House as Home Cook Heroes, preparing and serving home-cooked meals to our guests, and in the community by participating in speaking engagements, sharing their donation story, and spreading awareness for organ and tissue donation.
The Penkala family has accomplished so much and we are so grateful for all you’ve done for the Howie’s House, our transplant families, and the transplant community.
Lastly, our Guest Service Award was given to Ginneh Earle. Ginneh began volunteering at the Howie’s House in 2014 and has generously contributed over 400 hours of her time since joining our team.
Anyone who has been at the Howie’s House on a night where Ginneh is helping knows that they are instantly in good hands, as she makes sure that our Home Cook Heroes groups have everything they need, and always doing so with a welcoming smile. She often will stay at the Howie’s House until after 9pm, making sure several times that there is really nothing else she can do to help!
In addition to being a friendly presence at the Howie’s House on a weekly basis, Ginneh also has volunteered at the Dash and President’s Reception.
Ginneh does not have a direct connection to transplantation, but says that she just wants to help, and we can’t thank her enough for that. Her leadership, kindness, and commitment to support and comfort transplant patients, families, caregivers, and fellow volunteers is truly admirable.
Our volunteers play such an important role at the Howie’s House and we are so grateful for their help—thank you so much!
David and Elizabeth are leaving a legacy.
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 Howie’s House.
Twenty-five years ago, David and Elizabeth Kennedy lost their eldest son, David Jr., in a car accident. The couple made the brave decision to donate his tissue–one that helped 45 other people.
Shortly after her son’s passing, Elizabeth joined the Lehigh Valley Ambassadors for Organ and Tissue Donation to help spread awareness about organ and tissue donation. She also became involved with Gift of Life, and she and her husband began to attend volunteer meetings. They’ve also attended the Transplant Games since 2004.
When Howie’s House opened in 2011, David and Elizabeth began to financially support our mission, too, by becoming Family Circle members. They attended our President’s Reception, an event to honor our Family & Founder’s Circle members, and became interested in Gift of Life Howie’s House’s Legacy Society for Planned Giving. Both were thinking about redoing their wills and generously decided to include the Howie’s House in them.
“The Howie’s House gives patients one less thing to worry about,” David says. “What the staff does is absolutely amazing. It’s a great feeling to support it. We’re able to be a part of the Legacy Society, so why wouldn’t we?”
The Kennedys’ decision to join our Legacy Society and make a planned gift ensures that they will help families staying with us years from now, and that their values will live on in the future at the Howie’s House.
“We were thinking about what could be possible for the families who will stay at the house,” Elizabeth says. “We knew they’d need a place to go. We knew what we went through as a donor family and we can only imagine how difficult it must be for those on the waiting list. We understand how important it is for them to have their families close by.”
Are you also considering drafting or redoing your will? You, too, can join Gift of Life Howie’s House’s Legacy Society for Planned Giving and ensure that the love and care transplant families need will be provided for years to come.
Have you already included Howie’s House in your will?
Let us know so we can celebrate with you now! Enjoy recognition today as a Legacy Society member. Supporters who notify us that they have made arrangements for planned gifts will be recognized as members of our prestigious Legacy Society. Member who have made bequests of $10,000 or more will have their names added to the special Legacy Society Wall in the House’s living room.
Find more information here.
To discuss making a planned gift to Gift of Life Howie’s House or if you have already named us in your will, please contact Sara Cohen, Development Manager at 267-546-9812 or email scohen@giftoflifefamilyhouse.org. Please consult your attorney, tax adviser, or financial adviser before making a bequest or updating your estate plan.
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!
The ladies of Rutgers Gang have kept their college friendships especially strong. They began volunteering as Home Cook Heroes when the Howie’s House opened in 2011, and have continued their commitment to serving transplant families in honor of a member whose relative passed after while waiting for a multi-organ transplant and another whose daughter received two kidney transplants.
At least once a month, these women come together not only to catch up, but to prepare and serve a warm meal for our guests. “Some people don’t realize the stress on caretakers is very hard,” Barbara, one of the members, says. “It’s good to sit down, relax, and enjoy something other than a boxed meal.”
For one of their first meals, they prepared a big lasagna dinner. However, when they found out most other Home Cook Heroes groups were serving Italian-style meals, they started to change things up. Since then, they’ve served breakfast for dinner, Mexican meals, and have even barbequed outside.
“We’ve got our routine down to a science,” Barbara says.
After they finish cooking, the ladies will often go out to dinner themselves, bringing their husbands and boyfriends along with them.
“It’s fun to get together with my friends,” Barbara says. “It’s also fun to do something for others. We all love cooking and it’s something we can all do. The Howie’s House is so life-changing. It feels like home.”
We’re so grateful these women have found a home here at the Howie’s House and that by volunteering with us, they’re honoring important people in their lives.
We’ll see you next time, Rutgers Gang!
“My experience at Gift of Life Howie’s House is inexpressible.
I spent 42 nights there while my husband was in the hospital. The Gift of Life Howie’s House is a home. When visiting my husband daily at the hospital, I would find myself telling him what time I would be going “home” that day.
When I did arrive home, I was always greeted by the smiling faces of the dedicated staff and the aromas of a home cooked meal. The rides to and from the House were another gift. The volunteers, many of them transplant recipients, were a source of support because they knew exactly what I was experiencing. Of course, there was also a tremendous connection that developed among the guests.
Although everyone had a different story, and we were all on different steps of the journey, it was such a comfort to share my day with people who were walking the same walk as I was.”
–Judy, past family House Guest
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