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At Gift of Life Howie’s House, guests are provided with a private bedroom and bathroom that comes equipped with many of the necessities that families rely on when away from home. Many of those guests, however, experience limited mobility due to significant physical challenges that come with transplant and request rooms that are more accessible
Approximately 25% of guests make these requests. Unfortunately, many have to wait for a more accessible room to become available.
“You never know when you go somewhere if it’s going to be accessible, so knowing that we had this room where he could maneuver was a relief. It allowed him to have his privacy and independence, and I could have a little bit of free time as well. Even if it’s ten minutes where I could read a book while he showers, it makes a difference,”
– Donna Nelson, Past House Guest
Out of 32 guest rooms, only 5 have bathrooms that are equipped with walk-in showers. For some guests, navigating over the wall of a tub can be incredibly challenging or even impossible. Many patients require the use of a shower chair, which is also difficult to maneuver in an already tight space with a wet surface, like the bathtub.
Replacing a bathtub with a walk-in shower makes getting in and out much easier on both the patient and the caregiver. Guests with limited mobility do not have to worry about navigating over the wall of the tub, and those who require the use of a wheelchair have easier access inside of the bathroom and can transfer to a shower chair more smoothly.
Learn more about our campaign in our Spring 2023 Newsletter.
Spring Campaign 2023
Support the construction of four new, more accessible showers at the House.
For New Jersey natives, Maggi and George, their life turned upside down 7 years ago when Maggi was diagnosed with Idiopathic Pulmonary Fibrosis after a respiratory flare-up she had while snorkeling in Aruba. They were told that the disease was progressive, had no known cure, and would cause permanent damage in her lungs as time went on.
This news was a huge blow to the couple, who had just a year and half before and many of their favorite activities like snorkeling, kayaking, traveling, golfing, and hiking now seemed impossible.
For the next 7 years, Maggi would have to carry oxygen everywhere she went, go to check ups every 6 months, attend pulmonary rehab sessions, and prioritize living a healthy lifestyle in the case she would need a transplant. Despite all the challenges, Maggi and George remained positive and didn’t let her disease define their life. “I bought a mobile oxygen tank and we used it go everywhere… We traveled all over Italy and France, and even went on a cruise to Alaska. I was going to keep living my life.” says Maggi.
Maggi also was dedicated to staying up to date on the science around her disease and would participate in studies to help further the development of a cure. Maggi, who is one of 14 siblings, also has an especially unique case, as the disease runs in her family. She has two siblings who have been diagnosed with the disease and two more who could have had it but died before they could be diagnosed.
“I wanted to be on the forefront of what science was doing because science was moving fast,” she says. “My journey was to have an outcome that would save my life, whether it be getting a transplant or finding a cure.”
Maggi and George stayed at the Gift of Life Howie’s House for the first time back in 2018 during a pre-transplant appointment. Maggi heard about us through her Pulmonary Fibrosis support group which she co-leads with another Gift of Life Howie’s House guest.
Little did they know the impact the House would make on their transplant journey.
Even though Maggi was optimistic in the development of a cure, her condition was getting worse the longer she waited. So, in the spring of 2020, right in the heat of the pandemic, both her and her doctors decided it was time to start the process of getting on the transplant waiting list.
Within two months and after several evaluations, she was added to the waiting list for a lung transplant. Two months later, Maggi got the call that her lungs were ready.
Maggi and George both knew they would have to stay in Philadelphia for an extended period of time post-transplant, and they found comfort in knowing they had a safe place to call home while she recovered.
Maggi’s surgery went off without a hitch and she was out of the hospital in just 12 days, which is much shorter than the usual post-transplant stay. While Maggi was still in the hospital, George stayed at the Gift of Life Howie’s House and was able to visit her while she regained her strength.
Maggi has now joined George at the House and will stay here while she continues the rest of her recovery. They have made themselves at home here, and appreciate all the amenities we offer, especially during the pandemic. “The House provides you with everything that somebody would need… and it’s immaculately clean, you just have such a sense of safety here because you know that things are being taken care of,” says Maggi.
Maggi says that one of her favorite parts is that, despite the visitor restrictions, the couple were still allowed to visit with Maggi’s daughter, son-in-law, and two of their grandkids outside on our patio. George and Maggi have three kids and four grandkids between the two of them and enjoy keeping in touch by weekly Facetime and Zoom calls.
George, as Maggi’s primary caregiver, enjoys cooking and can often be found preparing meals for the two of them in our kitchen. During the pandemic and while caring for Maggi, he has had to continue to run his mechanical contracting business and has been using our library as an office. “It’s beyond comfortable here. The fact that I can walk 12 steps to the library and do my work in the morning makes things easy,” says George.
George also has taken advantage of our Caregiver Lifeline Program by attending our support groups and referring to the resources available on our website. Overall, they both say that the best part about the Howie’s House is the people they have met here.
“There is a comradery here because you meet and make friends with other families while you’re eating dinner that are going through the same situations,” says Maggi. “There is such a diversity of people you meet here, you really get to hear all different types of stories” adds George.
Maggi, an avid kayaker, says she is the most excited to get back to kayaking post-transplant. The couple are both looking forward to golfing and traveling again, and have plans to travel to Spain, Ireland, Portugal and Scotland as soon as the pandemic is over. Most of all, the couple is looking forward to spending more time with family, getting home to their house in New Jersey and enjoying many more adventures together, which is all made possible by the generous donor who gave Maggi a new lease on life.
| About the Gift of Life Howie’s House Gift of Life Howie’s House serves as a “home away from home” for transplant patients and their families by providing temporary, affordable lodging, and supportive services to those who travel to Philadelphia, Pennsylvania for transplant-related care. Click here for information on ways to support the mission of Gift of Life Howie’s House. |
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.”
Jim and his wife, Kim, began their organ transplant journey in October 2014 due to complications with his liver function. He initially declined treatment because he wasn’t feeling sick and wanted to continue working towards his retirement. “There was no indication how bad it was,” Jim says. However, as time went on, Jim’s condition worsened, so much so that he was near death and his doctor recommended he turn to Hospice care. Neither Jim nor Kim accepted this diagnosis, so he began treatment. Towards the end his treatment regimen, his doctor informed him that he would need a liver transplant in order to sustain his life. The doctor referred him to a transplant hospital in Philadelphia where he would be tested and listed for a liver. For five months, Jim and his wife traveled back and forth from Virginia to Philadelphia for appointments.
During this time, the Princes’ planned a trip to visit Kim’s brother who was ill and receiving treatment in a hospital in Pittsburg. They planned to meet up with family friends Peggy and John during the trip, but when they arrived, they learned that John had suffered from a blood clot and was brought into surgery. Sadly, John did not survive and was pronounced brain dead later that afternoon. This was a terrible tragedy for their family, but John’s wife Peggy bravely decided to make the selfless decision to donate her husband’s organs—and she wanted Jim to receive John’s liver.
Shortly thereafter, Jim’s transplant team in Philadelphia flew to Pittsburg overnight to bring the liver back. After an incredibly unique chain of events and a brave family’s decision, Jim’s life-saving liver transplant surgery was successfully completed.
His story became a hospital favorite across different departments and floors. He stayed in the hospital for almost 12 days and then joined his wife Kim at the Howie’s House for the first month of his recovery. He attributes his strength during recovery to his faith and the Howie’s House’s warm, friendly environment. “Everybody’s so supportive [at the Howie’s House],” Jim says. “This is our house, and our family, too.”
“You never know the importance of how something we take for granted can change a life forever,” Kim reflects. “If you have a life, you can save a life. You never want to lose a loved one, and if there’s someone you can help, you should be willing to help someone else keep a loved one.”
Since 1996, Gift of Life Donor Program has hosted the Donor Dash to promote organ and tissue donation and to raise funds to educate the community about the critical need for more people to register as organ and tissue donors.
All proceeds received through fundraising for the Donor Dash benefit Transplant Foundation, the charitable foundation supporting the mission of Gift of Life Donor Program. All funds raised at the Donor Dash go to support programs and activities designed to increase organ and tissue donor awareness, including sponsorship of Team Philadelphia’s participation in the Transplant Games of America, programs and activities in support of donor and recipient families, including the Gift of Life Howie’s House.
Register Now
The Dash celebrates the life-saving power of donation and honors all of the donors who make it possible. By supporting Gift of Life and the Donor Dash, you will help raise awareness about the critical need to increase the number of those registered as organ and tissue donors. We are looking to partners like you to help make a difference in the lives of those affected by organ and tissue donation. There are more than 5,400 people men, women, and children waiting in our region for a second chance at life through an organ transplant. You can help us make a difference!
Event Details
- Date: April 14
- Location: Philadelphia Museum of Art
- 10K run begins 7:10am
- 5K run begins 7:20am
- Kids Fun Run begins 7:45am
- 3K walk begins 8:30am
Registration:
Now through noon on April 9, 2019:
- 3K Walker: $30
- 3K Walker Upgrade: $55*
- 5K Runner: $35
- 5K Runner Upgrade: $60*
- 10K Runner: $40
- 10K Runner Upgrade: $65*
*Upgrade by March 14 to receive a Dash tech tee and running hat. Gift of Life will mail your tech tee and running hat before the Dash!
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.
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