Music, Passion, & Navigation -A word from Nicole

As an Ulman Adolescent & Young Adult (AYA) Patient Navigator, my role is multifaceted. I stepped into this role after completing my clinical music therapy internship at Children’s National in DC. Ulman & Children’s opened their doors to me as a full-time staff member as a patient navigator. Since then, Ulman has cultivated a passion in me for AYAs and their experiences before, during, and after cancer. As an advocate for the young adults we treat at Children’s, I staff the Teen Room on our Cancer & Blood Disorders unit. This room is a space for our adolescents and young adult patients to come together, socialize, and participate in different age-appropriate programming tailored to support them, keep them busy, and hopefully lift their spirits a little more while they’re here.
As a Board-Certified Music Therapist by training and Patient Navigator by role, I am able to apply key elements of my clinical music therapy background to my interactions with patients & families at Children’s every day. One of these elements includes assessing patients’ level of functioning in areas such as emotional/psychosocial, coping skills, mental status, and more. Through assessing these areas, I can apply best practices when getting to know patients and provide them with the best and most accessible resources, assistance as eligible, and one-on-one encouragement as they navigate the complex healthcare system. As a member of the Psychosocial Team here at Children’s, an integral part of my role includes constant communication and collaboration with our nursing Staff & leadership, Social Workers, Psychologists, Music and Art Therapists, Child Life Specialists, and Education Specialists and others who are involved in any given AYA patient’s care.

I strongly believe in carrying over my skills and experience in different fields to provide innovative and progressive approaches to my work as a Patient Navigator and Board-Certified Music Therapist moving forward. There’s no stopping in this role, and I’m so proud to work with such a resilient and dynamic population that is adolescents and young adults affected by cancer and blood disorders.

 

Nicole Sánchez Herera 
AYA Patient Navigator, Children’s National Health System

Need Navigation through a cancer diagnosis? Click Here.

 

 

When You Call Instead of Text: Telling your friends that you have cancer

When You Call Instead of Text: Telling your friends that you have cancer

I can count on one hand the number of friends I actually talk to on the phone. Usually, this is a scheduled call or facetime- a ‘catch up’ to fill in the blanks of what we may miss in our day to day texts. So, in 2014 when I was 26 years old, I wasn’t quite sure how to break the news to my long distance friends that I had breast cancer. Telling family had been one thing. They knew about my ultrasounds, mammograms, and biopsies. Friends were a totally different ball game.

A text was not appropriate, and a random call felt really ominous. A text saying “Hey do you have a few minutes today? It’s really important.” felt even worse. But then again, this was really important. It was a cancer diagnosis.

I opted for a combination of the random call and the pre-scheduled, awkward text option. Sometimes I had to leave a voicemail (something I never do). It was awkward and there was no way to be truly prepared. Here’s an outline of how these conversations went:

  • Awkward Greeting – There were a lot of confused hellos. Lots of question marks. Usually, the person on the other end of the phone knew that something bad was coming but had no idea what. Another thought I called to tell her I was engaged. What came next could not be further from an engagement.
  • Rip off the band-aid I decided to go the route of “Ok, I’m going to tell you something, and then I can tell you the details after.” No small talk, no back story of how I found out until after I told them the news.
  • Remind them you will be okThis may sound weird, but I felt responsible for my friends’ well-being. I reminded them that I would be ok, that I had a long process ahead of me and that I’d be fine.
  • Explain what’s happening Cancer was a disease that grandparents or maybe even a parent got. Not one of us. I made sure to explain what I knew at the time and what I was waiting to find out.
  • Tell them how you’ll keep them in the loopI let them know that I would keep up communications. At that point in time, I hadn’t made my diagnosis public on social media, so I let everyone know my ground rules. While it was not a secret; I just wasn’t ready to let the whole world know.
  • Ask for the favorTelling friends was emotionally draining. For some, I asked them to pass the news along to others. It was one less awkward phone call to make. This route isn’t for everyone, but it worked for me. I wanted to keep things personal but also needed to take care of my own mental well-being in the process.
  • Crack a jokeI didn’t want everything to be all doom and gloom! So, true to character, I probably cracked a mildly inappropriate joke here. Plus that first laugh after crying always feels pretty great.

I wasn’t necessarily afraid of telling my friends I had cancer but was afraid that they would ask the same questions I had. The questions I was too scared to say out loud. These questions put me in a vulnerable place that I didn’t want to go to. Ultimately, telling my friends was challenging, but the fear of telling them was far worse. It was worth it to let my friends in so that they could provide support, comfort, and laughter when I needed it.

 

The Ulman Cancer Fund for Young Adults

AYA Patient Navigator, MedStar Health Cancer Network

 

By |September 14th, 2018|Personal Stories|0 Comments

Christmas in July – Pam’s Story

One of the more rewarding aspects of being involved with Ulman is the people we come in contact with on a daily basis. People who commit to helping and supporting others, many of whom they may not ever get to meet face to face. One of our programs that thrives on the kindness of strangers is the 4K for Cancer. Each year nearly 150 college-aged men and women set out on a cross-country journey to raise money for our organization while having the adventure of a lifetime. Six teams of participants ride their bikes or run, from city to town to neighborhood across the country over the course of the summer. In order to make this possible, we secure hosts in each location asking only for a free and safe place to sleep for our teams. In many cases, a roof and floor is only the beginning as our 300 hosts go out of their way to make sure these remarkable participants are taken care of along the way. Pam Wrucke is one of those unbelievably generous hosts.

Pam is someone who thrives on staying busy and taking in all life has to offer. When I had the opportunity to speak with her she was in the process of helping her 88-year-old aunt grocery shop, something that has become her Friday tradition. Every Sunday evening Pam flies to Milwaukee, WI for a week of work and then flies home to Evansville, IN on Thursdays in time for Friday grocery shopping. She enjoys the travel and time in Milwaukee, where she used to live and has family, and especially enjoys her work consulting in the field of Health IT.

Pam recently celebrated her 30th wedding anniversary to her husband Wes, a school principal in Louisville, KY (who also commutes weekly), and is the mother of two children, a son Connor and daughter Christian. Connor and Christian both live in Indiana as well, Connor works as a Warehouse Manager and Christian is in school at Indiana State University. In addition to being a wife, mother, and travelling consultant, Pam still finds time for physical fitness.

Pam began running as a means to lose weight and focus on fitness. She jokes that her first half marathon was something she completed only because she was following the training program anyway and figured she may as well do the extra couple miles. She conquered the Evansville Half Marathon and lost 50 pounds in the first year of her fitness journey. Now, seven years later, 100 lbs. lighter, she has completed 20+ half marathons, 2 full marathons, and last fall did her first Tough Mudder at the age of 55. Pam reflected fondly on the Tough Mudder resulting in a forced confrontation of her fear of heights. She credits a group of friends and her Orange Theory Fitness family for her continued commitment, many of them run races together all over the country, including Pam’s personal favorite, the Louisville Half Marathon.

If Pam was not busy enough, she still finds time to volunteer at her church, Immanuel Lutheran, in Evansville, IN. Her commitment to making meals for congregational events and families in need is how she eventually intersected with the 4K for Cancer. Six years ago a 4K run team was first scheduled to stop in Evansville and stay at the church. A member of the congregation, Christy Jones, was recently diagnosed with colon cancer and video conferenced from the hospital with the team. Pam reflected on the impact that team had on Christy and how many of the team members dedicated runs for the next several days for Christy. Unfortunately, shortly after their visit in July, Christy ran out of time in her battle with cancer. When the team first came through Evansville, they were only there for one night, no rest day or service day was scheduled, but that changed, and a service day now accompanies the stop. Stories of Christy, Pam, and Evansville’s generosity and kindness is passed from team to team.

One year the team was scheduled to stay in Evansville on July 24th. The team called ahead to ask Pam if it was okay if they celebrated Christmas in July, a 4K tradition, during their stay. Pam immediately set out to play her part. She pulled out the Christmas tree, purchased candy canes, and even enlisting a member of the congregation to dress as Santa and offer sleigh rides in tow of a John Deere tractor. When the team is not celebrating Christmas in July, the congregation hosts an annual bonfire to welcome the team. Knowing the 4Kers very well, the congregation is all encouraged to bring their dogs to help welcome the team.

Pam spoke of one of the 4K participants teasing her about being the team mom and invited her to participate in the experience Ulman has for ‘old people’. Never one to submit to a busy schedule or back down from a challenge, Pam is now registered to participate in Point to Point this September and is very excited to have her own Ulman experience. ‘A lot of people think I’m crazy for doing this, including my husband. I am always on the go and people tell me they get tired from reading my Facebook page, but that’s my lifestyle and that’s what I like and wouldn’t have it any other way.’

Pam epitomizes the values of Ulman: Be Human, Be Better, Be Courageous, Be Committed. Now having wrapped up her annual 4K host duties and sending a full and cheery Team Baltimore on the last leg of their journey, Pam is preparing for a journey of her own.

— RJ Canning, Director, Support Through Sport

The Desire to Make a Difference – A word From Averil, Program Director, Events & Marketing

One of the things that attracted me to the Ulman Cancer Fund for Young Adults from the start was the wide range of exciting events put on throughout the year.  But in the three years I’ve spent working as the Events & Marketing Director, I know that it’s truly the people behind the events who are the most inspiring. Attendees, volunteers, and the people and partners who are responsible for the success of our events share one commonality – a hate of cancer and a desire to make a difference. Without these people, we would not be able to raise the funds and awareness to one day ensure that no young adult will face cancer alone.

When I first started at Ulman in June of 2015, I was quickly immersed into the amazing, expansive Ulman community.  I went down to Charlotte, NC for 24 Hours of Booty, held by 24 Foundation. Ulman is a beneficiary of the sister event, 24 Baltimore, and I wanted to see what everyone was talking about – the 1,000+ cyclists riding up to 24 hours on a closed loop around a college in Charlotte.   It was then I realized how electrifying the event is.  Watching so many people of all ages and athletic levels churn out miles in honor or in memory of those they love, was incredibly inspirational and 24 Baltimore is no different. I can’t wait for this year’s 24 Baltimore event, hosted on the Johns Hopkins University campus, on September 15 & 16.  

Later that summer I got to meet the fine folks of the Donna Sunderdick Memorial Pedal & Paddle, a fun cycling and swimming event in Columbia, MD.  I also watched as hundreds of runners and walkers came out to support the Pikesville 5K, which each summer benefits Ulman and the Pikesville Chamber of Commerce.  I got to know the lovely Silver family, who host the Eff Cancer Golf Scramble, now 10 years going, to remember their son, brother, and friend, Sean, just outside of Chicago, IL.  And I attended the Corridor Classic, put on by Corridor Mortgage Group, a two-day golf tournament that benefits Ulman and the Special Olympics of Maryland (coming up on September 12 & 13!).  

In the fall I headed out to Shavertown, PA, a mountainside town south of Scranton.  There, the Wood and Marquart families have been hosting Screw Cancer Brew Hope PA for the past 4 years – an event that brings together hundreds of supporters for an evening of silent and live auctions, entertainment, and inspiration.  You can read more about the Wood and Marquart families’ commitment to the young adult fight in our recent blog post

Screw Cancer Brew Hope Baltimore is hosted by the Body of Young Adult Advisors (BOYAA).  These exceptional young professionals plan every detail of the event from date, to location, to music and food, and use their own connections to sell tickets and sponsorship.  Now hosted in the spring, the event is an amazing friend-raiser and fundraiser that is flourishing and helping expand our mission. BOYAA was one of the first groups I met upon starting my Ulman voyage, and this group of talented people continue to push the boundaries so that more people can be served.  

Three years later from when I joined the team, our event portfolio and community is still growing.  This past spring Charm City Builders spearheaded the first ever Fight Night, an amateur boxing event benefiting Ulman and the Amystrong Foundation.  We also just had our first ever Screw Cancer Brew Hope Annapolis hosted by a dedicated board member. Gilbane is hosting their annual golf tournament to benefit Ulman, and the new Cycle to Inspire will take place on November 10.  And, our long-standing events are still going strong- the Beard Off is still growing (get it?!) and the Blue Jeans {& Bow Ties} Ball will be back for its 21st year this February!

Ulman’s events wouldn’t be possible without the generous support of our community – those who put on events, those who attend, and those who volunteer.  If you’re interested in hosting an event to benefit the 70,000 young adults contact me! Averil@Ulmanfund.org or 410-964-0202 x117. And, as always, keep your eyes open for the next upcoming event on our website or in our monthly newsletter!

 

Sign up to Volunteer

The Experience of a Lifetime – With Emma Sanning, 2018 Team Baltimore

I was diagnosed with carcinoid cancer a week after my 19th birthday at the end of my first semester of college. My freshman year, I opted-out of spring break plans with my friends to go home to have a foot and a half of my colon removed. Thankfully, I am now cancer free. I still have MRIs very frequently and meet often about my health but am thankful for clear scans and positive check-ups. 

When I was diagnosed, cancer seemed to be a threat to my “normal” college student life. I really struggled to tell my friends. Even when I told my closest friends, I would say that I was “just having a small surgery” or “the doctors found something they didn’t like- but they are fixing it” or “just a clean-up surgery!”. I was really afraid of what people would say, but ultimately, I was afraid to admit that this really was a BIG deal. This wasn’t something that normal college students dealt with. Normal college students did not have to go to countless doctors, they did not have their own oncologist, and they did not spend their breaks at home having what felt like a million scans. I really did not know how to talk about cancer or how to lean on others for support. What I know now, is that it is really important to talk about it. To be open to others, to lean on support networks, to let others lift you. But more than that, I really believe that it is important to take the things in life, for me it is my experience with cancer, to be vulnerable with others so that they do not have to face it alone. That is what 4k means to me. 

4k has motivated me to get back on my feet. I frequently think about how weak I felt after my surgeries, how I could barely lift myself out of bed, and about how running a tenth of a mile left me breathless and sore. Every day when I train for 4k, I am thankful for a body that can still run and for a cause that keeps me running.

Experience what 4K means next summer! Ride or run summer 2019. 

 

– Emma Sanning

4K for Cancer, 2018 Team Baltimore

Follow Emma and the other 4K teams this summer as they make their way across the country! Vist 4kforcancer.org and view our “2018 Trips”

Finding My Why – A word from Jen, Program Coordinator, 4K for Cancer

I signed up for The 4K for Cancer last summer because it was an experience that combined two of my passions – running and giving back. Thinking about it now, when I decided to take on this journey I would have never imagined how much 4K would change my path, but I’m so thankful it did.

Last year as my team and I took off running from Crissy Field in San Francisco I would have never guessed that the same time, the following year, I would be on the other side of 4K send-off as a Program Coordinator for the program. Although instead of getting ready to run, I would be helping the new group of 4K riders and runners start their journey to set off across the country by foot or bike. And I think that is the special thing about The 4K, everyone goes into it knowing it will be a life-changing experience, but they’re not quite sure how.

When signing up for the 4K, I knew that I was going to form friendships that would be unlike anything else, but I had no idea how these friendships would help me up some tough mountains, both literally and figuratively. I knew I was going to meet incredible and inspiring cancer survivors and patients, but I didn’t know how much their stories would truly touch my heart. I knew I was going to build my connection with The Ulman Cancer Fund, but I had no idea how my relationship to this community would shift from one of receiving support to one of giving.

My new role within the Ulman has given me many more opportunities to give support. One of the most memorable opportunities so far was during my visit with one of our 4K teams. For the first few days of each 4K trip, one of our 4K staff members joins each team to help get them on their feet for the summer. During my time with the team, we all sat in a circle and shared our Why. As we went around the circle, sharing our stories and shedding some tears, I could see the special part of 4K in action.

Experience what 4K means next summer! Ride or run summer 2019.

On that night, I was amazed by the vulnerability this group of young adults showed. They had only known each other for less than four days, but they were willing to share some of the toughest things they have gone through with one another. One thing from this meeting that stuck with me was how in this group of young adults, from all across the country, with different backgrounds, and whose paths would have never crossed if it weren’t for the 4K, still shared similar stories, similar heartaches, and similar whys. The things they went through can often make people feel quite alone, yet through signing up for a bike ride or run across the country they all gained a support system of people who could truly understand.

The 4K for Cancer and other Ulman Cancer Fund programs not only bring people together for a common cause, but it brings people together for support in moments where they need it most, and I think that is what makes these programs truly life-changing

Follow the 4K teams as they make their way across the country this summer!

Vist 4kforcancer.org and view our “2018 Trips”

 

The meaning behind the music – an interview with Kathy and Buddy Oliver

Kathy and Buddy Oliver met in the fall of 1987 at Lebanon Valley College where Kathy was majoring in social work and Buddy was majoring in Music. Their son, Bo, was born in 1996 followed by their daughter, Rachel, in 1998. After Bo’s cancer diagnosis in March of 2012, the Olivers began their relationship with The Ulman Cancer Fund; first as recipients of support and then as ardent supporters themselves, committed to improving the lives of young adults faced with cancer.

 

Tell us a little bit about Bo’s cancer journey and how Ulman fit into it.

Our son Bo was diagnosed with Ewing’s Sarcoma, a rare pediatric bone cancer, in March of 2012, while a sophomore in high school. Bo’s initial course of treatment included 7 months of intense chemotherapy, radiation and then a stem cell transplant, to which his body’s response was very positive. In March, 2014, the cancer returned once again. This time, a donor lymphocyte infusion (DLI) was recommended. In May of 2015, we were told by our doctors that they had no further options to help Bo. Regardless, we were able to extend his life through the use of multiple holistic treatments and therapies. On June 1, 2016, Bo lost the toughest battle of his life. He faced the disease with a resilience, strength, and faith that was awe-inspiring. We initially heard about Ulman through our social worker, Allie Gubin.  Bo was fortunate to have been a recipient of a scholarship through Ulman. We also received help through Helping Others Fight.

How did your own community rally around you while you?

We have been so blessed by our community.  They have held many fundraisers for us, made us countless number of meals, visited Bo in the hospital and at home, went along on appointments, cut our grass, cleaned our house, offered emotional support, organized and attended prayer vigils, and always loved on our family.

Buddy, in what ways has music impacted your life and how did you pass down your love of music to Bo?

Music has been the single largest influence in my life. I started listening to music as a small child as my father was a stereophile. I started playing music in third grade and never stopped. The summer after my high school graduation, I was privileged to play with a Jazz group at the Montreux Jazz Festival in Switzerland which was a milestone event in my life. Music has even been an expression of my faith as I was a worship leader for almost 20 years.

For these reasons, Bo didn’t have a chance. We have a photo of him at probably 2 years old sitting behind a drum set of an old bandmate of mine. Our kids always were encouraged to do their own thing, he just always came back to music. I believe certain talents are part of a person’s DNA, Bo’s DNA was a music staff full of notes. He was truly gifted from birth and by the time he was in high school he was rivaling my 30 years of experience. As a Junior in High School, he auditioned for, and was accepted to, one of the most prestigious music schools in the world, Berklee College of Music in Boston –  which has produced almost 300 grammy winners.

Besides his love of music, Bo was also known for his quick wit, incredible sense of humor, and his love of ‘Merica. He had a definite sense of right and wrong and loved his family and fiance with all that he had. His faith was an integral part of who he was. He had a presence that filled up a room when he entered it. He had the gift of being able to engage with people of all ages, backgrounds, and ideologies.

Kathy, you recently went on UCF’s Key to Keys Experience. What was that like?

I went into the Key to Keys ride thinking the biggest challenge was the physical part, the ride. I had no idea how emotional the week would be. I was in a group of people that actually got how cancer impacted my life. I was given the gift of being able to talk about Bo, tell his story and talk about the BoStrong Foundation. I was also given the precious gift of being able to listen to other people’s stories. I have been blessed with being a part of another community of amazing people.  

What is the BoStrong Foundation?

We established the BoStrong Foundation in 2017 with the mission of supporting holistic wellness for young adults fighting cancer and their loved ones through education, enrichment, engagement, and experience. Our daughter Rachel and Bo’s fiance, Bailey Jones, serve as co-vice-presidents. They represent the organization and help with fundraisers and other organizational activities. BoStrong’s current focus includes:

  • Teaming with Ulman Cancer Fund to provide a music healing space and supporting programming in the Ulman House.
  • Educating young adult cancer patients and their caregivers about holistic treatment options and therapies.
  • Instilling confidence in those on the cancer journey that it’s “OK” to take control of their treatment, ask questions and explore options.
  • Connecting patients with available resources to support them in their cancer battle.

At this point, Bo’s passion for music is pretty apparent, but why did you decide to create the music room in the Ulman House?
Bo’s own words describe the power of music best…

What I really needed was something that would relax me. Something that would pass the time and ease the horrible and terrifying battle that I had with Cancer. I knew it! My guitar. Every second I was on the inpatient floor I was playing my guitar. I truly believe that the guitar made me feel better. Music has such a way of relaxing you. I know for me, I get sucked into my playing. I’m in a different world. Whether I’m on stage with my band or in a dinky hospital bed with my amp plugged in next to me playing for my family and the nurses. Along with anyone else that wanted to hear. Music is a medicine that did more for me than Chemo ever would. Chemo wasn’t there to take away the stress of having Cancer. And it certainly didn’t make my time in the hospital enjoyable. Music made that experience bearable.
Bo Oliver

 

We don’t just believe music will help the ‘experience’ of treatment. We believe it IS treatment and Johns Hopkins along with NIH and many other medical learning institutions agree. There are countless papers and studies validating the healing power of music, particularly in cancer patients. We believe that the music room can be part of a holistic and complementary treatment regimen. Through trained music therapists that will be available, we can work with young adults on music therapy, drum circles, singing bowls, education on curating playlists geared toward pain management, depression, anxiety, etc. These lists can be used in the ‘sanctuary’ of the dedicated music room as well as while in therapy.

How can the Ulman community help with the process of completing the room and/or carrying out your goals for patients staying at the House?

The Ulman community can help primarily through exposure and highlighting our foundation. They can join with us on events, lending weight and credibility to our cause. We still need to raise considerable resources to build out and outfit the room. Any connection with and exposure to donors is helpful. After the room is completed, we will rely heavily on the Ulman House staff to promote the room and its programming to the residents. We will need help coordinating and scheduling programming with therapists. We will also be organizing ‘Jam Sessions’ for residents who are musicians by bringing in local ‘on call’ semi-professional volunteer musicians. We will also collect feedback on the state of the room, any suggestions for improvements, maintenance needs, training, etc.

If you would like more information about the BoStrong Foundation or would like to contribute to the building out or operating of the music room, please email Kathy and Buddy at: partners@bostrong.us.

 

 

The Ulman House – A Visual Timeline

The new year brought a ton of progress to the house! It is amazing how quickly things moved along once the foundation was laid. The focus in January was getting the structure and the beams in place. With the walls up, we were able to put the windows (generously donated by Vytex Windows) in the back of the house. The facade took a little longer to complete as work needed to be done first to remove the Formstone and then to restore some of the brick and make the windows and door spaces uniform. This work was done throughout March and April and as you can tell from the pictures, the facade is beautifully restored to its 1905 glory!

<<Click here to see the deconstruction process>>

May was an amazing month of progress on the house. With the structure nearly complete we got to spend a lot of time inside going over all of the details that will make the house both comfortable and functional. We went through the placement of the outlets, whether doors would open into rooms or swing out, where to place the pulls on the kitchen cabinets, how to incorporate the original salvaged wood, how big to make the back decks, and so much more. There is an incredible amount of detail involved in bringing a house to life and we are so fortunate to have the amazing talent of J Cole Builders to help us through the process.

As construction begins to wrap up we will we need the help of our wonderful community to make this house a home! With the beautiful vision of our founder and interior designer Diana Ulman, we have created our Housewarming Registry to begin furnishing the space. We ask that you visit the registry and purchase an item for the house that will make our guests’ stays a little more comfortable. We’ve put everything from kitchen utensils to furniture on our registry. Feel free to purchase something individually or team up with friends and family for one of the bigger items. Donations are tax-deductible through an in-kind gift receipt. Please direct any questions to maeve@ulmanfund.org.

We look forward to working with our community to make the Ulman House a home!

 

January 

After the steel beam was placed, the walls and trusses were erected. All of the trusses for the ceilings were carried through the alley by hand. Our construction crew are masters of navigating the challenges of building in Baltimore!

 

February

We have windows! The natural light that will come in through the many windows- including two amazing skylights at the top of the main stairs- will create a bright welcoming atmosphere for patients and caregivers.

 

March

After the Formstone was removed, the brick mason spent countless hours refurbishing the brick and making sure all of the window and door openings were uniform. The stars you see aren’t just for looks, they actually provide important structural support from steel rods that go deep into the house.

April

The Music Room is coming to life! Insulation, sounds proofing, and drywall were completed this month.

                    

May

See that giant generator? Generously donated by Windsor Electric, the generator can power the whole house in case of emergency. Our beautiful cabinets were also installed in May a gift (along with all of our appliances) from the Maryland Homebuilders Cares Foundation.

 

 

A community of support – A word from Sophia, Volunteer Coordinator, Ulman House

When I first heard about the Ulman Cancer Fund for Young Adults, I was in college and looking for an adventure.

I found the 4K for Cancer and immediately was struck by the power of the mission. I remember searching UCF online and getting caught on the mention of community.  The word “community” was the first thing that caught my attention. “A community of support” was at the center of my own personal mission and I knew I wanted to be a part of an organization that was utilizing this to support young adults with cancer. Fast forward two years to when I signed up for the 4K to fundraise $4,500 and bike 4,000 miles across the country. I wasn’t sure I was cut out for that kind of experience and was about two clicks away from rejecting the offer until I read about the dedication circles that started every ride. The idea of motivating with the mission every morning was my first inclination that this would be something life-changing. I completed the 4K for Cancer ride in August of 2017 and less than a month later moved down to Baltimore to start an AmeriCorps year serving at UCF as the Volunteer Coordinator.

Throughout my service year as the Volunteer Coordinator, I have been able to expand my ideas of what volunteerism is, what it can be and why our volunteers are the lifeblood of our organization. Our organization is unique because of the diversity of our programs and the varied use of volunteers. Volunteering for UCF can mean cooking and delivering a home cooked meal to a patient, helping run registration at one of our many events, serving food to our 4K for Cancer Riders and their families at send-off or even planning an activity hour for guests staying at the Ulman House. Coordinating the Volunteer program has allowed me to observe how powerful a small act can be to a patient who is going through so much. I have watched as some of our incredible volunteers have changed lives with simple acts of service, and that is pretty special.

When I came onto the team in August, I saw that our supporter and volunteer network was large and long-standing. The individuals who have supported UCF often come back and support again and again and again. The commitment of the volunteers is one of the reasons we are able to put the idea of a free housing opportunity for Young Adult patients into reality. As we prepare for the Ulman House to open, there is an incredible opportunity for volunteers to hop on board and be a part of the (literally) groundbreaking project.

Volunteers write letters to patients in treatment

Volunteers at the Ulman House could help with…

  • Check-in desk duties
  • Setting up an activity hour for our young adult guests and their caregivers.
  • Preparing meals
  • Keeping the house clean and comfortable for our visitors

with more opportunities to come!

My favorite moment of my service year has been our Martin Luther King Jr. Day of Service we had in January. Unsure of how the turnout would be we were thrilled that over 50 people donated their days off and came ready to help out. There was an overwhelming sense of purpose in the room as the volunteers packaged chemo care bags, wrote cards to patients and nurses, and helped clean up the neighborhood in East Baltimore where the Ulman House will soon be opened. It was a wonderful day full of connections, laughs and an important reminder of what we can accomplish when we come together.

Volunteers pick up trash and clean up the community around the UCF house

 

Sophia Garber

Volunteer Coordinator, Ulman HouseSign up to Volunteer

UCF Milestone: A Victory in Annapolis

Dear UCF Supporter,

Parenthood is a lot of things. Being a parent is frustrating and hard and miraculous and exhausting and beautiful and thankless and joyful and overwhelming. It is everything–sometimes all at once. And yet, it is by far the most rewarding, important thing I do. Like many, I could probably write about my experience as a parent until it’s an entire novel. But today is not about me. It’s about all of the to-be parents who will now be able to experience what it means to have a child, even after going through cancer treatment.

 Around 10 years ago, the Ulman Cancer Fund for Young Adults first sat down with young adult cancer patients and their families in a hospital room to seek out the ways in which we could make this experience better. What resources were they lacking? What had they wished they had known prior to treatment? This is where I first learned about the dire need for fertility preservation–and the extreme financial burden that comes along with it. At that point, Maryland law did not require insurance companies to cover fertility preservation, which would only add to the high costs that come with a cancer treatment. During treatment, the high levels of radiation can lead to the destruction of fertile egg or sperm cells, severely limiting the chances for patients to have a child of their own. For a young adult who already has to spend their weekends in a hospital bed, instead of out in the world gaining life experience, this seemed like twisting the knife. We had to do something.

<<Read the full Press Release HERE>>

After countless hours of meeting with elected officials, medical experts, and many courageous individuals who fearlessly told their stories, we succeeded in getting our bill passed through state legislation. It mandates that medical insurance companies cover the cost of preserving a patient’s fertility. In other words, just because you had cancer does not mean you can’t also be a parent–a no brainer, in my opinion.

Ultimately, this bill is about choice. Not everyone knows for certain that they want to become a parent, especially if they’re only in their young twenties, for example. But imagine what it might feel like if the option is entirely stripped from you, or if it’s because you can’t afford it? No one should ever have to face this decision, and now–at least in Maryland–they won’t have to.

It seems fitting that only two days after Mother’s Day we are able to come together to officially cement this bill in legislation. There has been so much hard work, bravery, and thought that has gone into crafting this bill, and I am so proud of our team and everyone who has had some contribution into creating this milestone for the Ulman Cancer Fund for Young Adults and the young adult cancer movement.


Brock Yetso,
President & CEO