SUPPORT THE JRBF TODAY
SUPPORT THE JRBF TODAY

Joanna’s Journey

I just feel different than everyone else.

As a child and early teen, Joanna Bell began to show some physical and cognitive
abnormalities, telltale signs of something much more insidious. In 2006, at the age of 16,
she was diagnosed with Neurofibromatosis type 1 (NF1). This genetic, multi-system disorder
occurs in approximately 1 in 3,500 people and is most associated with peripheral nerve
tumors called neurofibromas often causing chronic pain. Tragically, many women with NF1
may choose to avoid childbearing due to complications arising from hormonal factors that may worsen neurofibromas.

Joanna had a unique perspective on life
partially due to NF1.

From an early age, Joanna was a “people person” and an outstanding conversationalist, leading to many close friendships. She possessed a unique ability to connect to others through her sincere interest in their everyday lives, allowing her to build many friendships during her life. Though not large in stature, she was deceptively strong physically, and
was well known for her “rib crushing” hugs.

Joanna had a unique perspective on life
partially due to NF1.

From an early age, Joanna was a “people person” and an outstanding conversationalist, leading to many close friendships. She possessed a unique ability to connect to others through her sincere interest in their everyday lives, allowing her to build many friendships during her life. Though not large in stature, she was deceptively strong physically, and was well known for her
“rib crushing” hugs.

Nearly 15% of all NF1 patients will die
from aggressive nerve tumors.

In 2012, Joanna began having chronic pain in her right hamstring, a new symptom alongside the small, unmistakable neurofibromas on her skin. Physicians soon discovered a small neurofibroma on her sciatic nerve, but there was hesitancy with regard to surgery since it might impact her long-term leg function. By 2021, the tumor had grown significantly and was classed as a deadly malignant peripheral nerve sheath tumor which later metastasized to Joanna’s lungs
resulting in a stage 4 cancer diagnosis.

Nearly 15% of all NF1 patients will die
from aggressive nerve tumors.

In 2012, Joanna began having chronic pain in her right hamstring, a new symptom alongside the small, unmistakable neurofibromas on her skin. Physicians soon discovered a small neurofibroma on her sciatic nerve, but there was hesitancy with regard to surgery since it might impact her long-term leg function. By 2021, the tumor had grown significantly and was classed as a deadly malignant peripheral nerve sheath tumor which later metastasized to Joanna’s lungs resulting in a
stage 4 cancer diagnosis.

Joanna’s resilience and strength lead to
the founding of JRBF.

Joanna died eight months after her stage 4 diagnosis on July 12th, 2022 as her lungs collapsed from aggressive tumors. Ultimately, Joanna’s unwavering faith in Jesus Christ gave her strength through the most difficult days of her life. Her resilience and strength in dealing with her disease inspired family and friends to start JRBF with the belief that no person or family should have to endure NF1 related suffering.

Joanna’s resilience and strength lead to
the founding of JRBF.

Joanna died eight months after her stage 4 diagnosis on July 12th, 2022 as her lungs collapsed from aggressive tumors. Ultimately, Joanna’s unwavering faith in Jesus Christ gave her strength through the most difficult days of her life. Her resilience and strength in dealing with her disease inspired family and friends to start JRBF with the belief that no person or family should have to endure
NF1 related suffering.

JRBF is a new non-profit dedicated to advancing NF research and treatment with a special focus on NF1.

JRBF is a new non-profit dedicated to advancing NF research and treatments, with a focus on NF1-related diseases.

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Contact: info@jrbfNF1.org