Turning Awareness into Action

In 2025, the Schoen Family Charitable Trust was honored to provide a grant to the International (FOP) Association (IFOPA) to support its mission of raising awareness about Fibrodysplasia Ossificans Progressiva (FOP). This funding has helped IFOPA to expand awareness of FOP among healthcare professionals and identify critical gaps in education that can improve diagnosis and care. In the message below, Michelle Davis, Executive Director of IFOPA, shares how this partnership is making a lasting difference for those affected by this rare disease.

Fibrodysplasia ossificans progressiva (FOP) is the only known disease in which one normal organ system—muscle—transforms into another: bone. This abnormal bone growth can begin in infancy and continues throughout a person’s life. Over time, people living with FOP can become encased in a second skeleton, and most require a wheelchair by the age of 30. Although FOP is one of the rarest and most disabling genetic conditions known to medicine, many healthcare providers have never encountered it.

In 2025, funding from the Schoen Family Charitable Trust made it possible for the International FOP Association (IFOPA) to attend two major medical conferences to raise awareness of FOP among healthcare professionals. During the American Academy of Family Physicians Conference, we learned directly from doctors that many were unfamiliar with how to order genetic testing for rare diseases like FOP.

That insight led to an important new opportunity. Early this year, through the University of Pennsylvania Orphan Disease Center’s Genetic Counseling Student Exchange, the IFOPA was paired with a genetic counseling intern to help develop an FOP guide for healthcare providers, including guidance on ordering genetic testing.

Without the Schoen Family’s support, we would not have identified this critical educational gap. Thank you for helping raise awareness of FOP and create a better path to diagnosis and care for individuals and families around the world.

Michelle Davis, Executive Director

Medical conference

Partnering with Stonehill Communities to Launch CNA Program

The Schoen Family Charitable Trust collaborated with Stonehill Communities to help create a dedicated space for a Certified Nursing Assistant (CNA) program on the Stonehill campus.

To make this initiative possible, Stonehill began renovations of an existing room in 2024. The project included a variety of physical upgrades to transform the space into a functional classroom including, new flooring, fresh paint, update lighting and more. The room was also outfitted with an instructor’s desk, tables and chairs for students.

In addition to the structural improvements, the classroom received a technology upgrade. This included a new large-screen television with wireless streaming capabilities, a computer for the instructor and essential classroom supplies - including a medical mannequin for hands on training.

The Classroom is now complete and in active use. This important project will have a lasting impact on Stonehill enhancing both the quality of care provided to resident and the training and development of future CNAs.

MercyOne Cancer Center

The collaboration between the Schoen Family Charitable Trust and MercyOne Dubuque Foundation began in 2019, to help Mercy Hospital achieve their goal: to create a space where cancer patients and their families could receive top-notch care in a single location. By 2023, that vision became a reality with the completion of the Cancer Center at Mercy Hospital.

Now, with the MercyOne Cancer Center fully operational, patients can access all the services they need in one convenient place. While many contributed to making this project possible, we are particularly proud to have played a part in supporting the creation of an exam room. Our donation reflects our mission to prioritize families facing the difficult diagnosis of cancer, ensuring they have a space where they can feel both comfortable and respected, with the privacy they need during such a challenging time.

Sister Water Project

Sister Water Project, a committee of the Sisters of St. Francis of Dubuque, IA. plans mission trips to Tanzania, Africa to help local villagers have access to clean and safe water. Two board members from the Schoen Family Charitable Trust traveled with a group for one of the trips. They had an unforgettable time and were both deeply moved by their experience. Upon returning, they suggested The Sister Water Project committee submit a grant request to our foundation to financially support their mission.

After hearing about their mission trip The Schoen Family Charitable Trust board voted unanimously to help and were able to provide funding to support the installation of a sustainable ring well and hand pump that will bring clean year round water to the villagers in Sungura-Kidudwe, Tanzania. It is expected this well will serve over 780 people, the majority of whom hold and run small farms.

Make-A-Wish Golf for Wishes

During such a difficult year it was great to be part of an event with such a positive outcome. Members from our board participated in Golf for Wishes 2020 making an impact on one child’s life.

Ivy, a spirited five year old, and her family will be escaping to Walt Disney World Resort for an entire week. Not only will she get to meet her favorite Disney characters from Frozen, Elsa and Anna, she will also get to relax and enjoy her time with her family in a private villa created for wish families and be treated like a princess.

Walking for Awareness

The Schoen Charitable Trust was able to participate at Father Carr’s 3rd Annual Bridge Walk where just over 250 people walked under the Lake Butte des Morts Bridge to raise awareness and funds for those in need of food and shelter. After the walk, we were able to tour Father Carr’s where we learned about the establishment and how they guide individuals without homes to independence.

Spa Day in a Bag

Last year, the Schoen Charitable Trust was delighted to fund Hospice of Dubuque in their spa bag project. The grant gave Hospice of Dubuque the funding to purchase quality bags as well as personal care and pampering items for each staff member to take with them when visiting their patients.

Pictured below are six certified nursing assistants from Hospice of Dubuque showcasing their spa bags

Lourdes Academy and Aquos boards make learning fun!

Members of the Schoen Family Charitable Trust board were able to visit Lourdes Academy to see first hand how their grant for Aquos boards in 2017 enhances learning. Students and teachers work interactively to make education more interesting.

Learning the power of poetry through Deej

I have always thought that poetry is autistic: it revels in patterned sound. 

- DJ Savarese (Deej)

Renowned writer and advocate for people with disabilities, Deej has created an impact through his poetry based on his own experiences on being an individual with autism who is non-speaking. Carefully crafted, each of Deej's poems powerfully expresses the intricacies of his life, leaving the reader with a sense of wonder and awe.

The Schoen Charitable Family Trust was truly honored to help sponsor Deej's event at Loras College in Dubuque, Iowa on October 19, 2017. Open to the students and the community, and attended by Laura, Vicky, and Connor of The Schoen Charitable Family Trust, Deej showed his documentary and concluded with a question-answer session. 

Click here to watch a trailer for his documentary Deej. 

Click here to access Deej's website for further information about his poetry, film, and activism. 

(Left-Right) Deej, Vicky Schoen, Connor Schoen (current Loras student), and Laura Mootz