Dear Friends and Family,

Thank you for visiting my fundraising page to support the patient fund in the Duke Adult Bone Marrow Transplant program in loving memory of my mom, Ilene Nusblatt, on the one year anniversary of her passing.

Scleroderma is an autoimmune disease characterized by hardening of the skin and the body’s connective tissues, which manifests in different ways throughout the body: organ fibrosis, skin hardening and discoloration, and poor circulation to name a few of the most common symptoms. It is a rare disease, affecting approximately 300,000 Americans today. It’s not known for sure how Scleroderma is caused, and there is also no cure for Scleroderma. There are many treatment options available for maintaining symptoms, ranging from chemotherapy to stem cell transplants to medical cannabis, but the treatments often don’t work for everyone. Scleroderma is a truly devastating disease, and my family has learned to live with this disease for the past 15 years.

Ilene was diagnosed in 2008 with Scleroderma. The disease initially affected her lungs and skin. After a lot of trial and error, and the loss of her right index finger due to a bone infection, Ilene found treatment that worked, which alleviated the stress on her lungs and stopped the disease from progressing further. Later, the disease went on to attack her GI system, resulting in many hospital stays and a complete shift in diet and lifestyle. Eventually, Ilene was finally able to regain her strength and stability with the help of her husband, Jay, daughter, Ava, and their loving cats.

In 2021, we determined that Ilene was no longer able to tolerate one of her lifesaving medications. She had to stop taking the medication, and the disease came roaring back. With the help of some loving friends, Ilene got connected to the Adult Bone Marrow Transplant program at Duke University Hospital. With only a few limited treatment options available, there was only one option with the possibility of improving her rapidly deteriorating condition: an Autologous Stem Cell Transplant. This procedure involves completely destroying the body’s immune system and building it back up from scratch, with the hope of eliminating the diseased autoimmune response in the process. Ilene was known amongst her medical team as a unicorn: no Scleroderma patient had ever previously undergone a stem cell transplant at her age and stage of disease progression. There were no promises that the transplant would work. 

After a full year of recovery from the transplant and working tirelessly to build her mental and physical strength, Ilene was surprisingly diagnosed in early 2023 with stage IV lung cancer, which had metastasized to her brain. Ilene’s strength was overflowing and unparalleled until the end, even amidst cognitive and physical decline. Ilene lived her 9 lives (and then some) to the absolute fullest. She passed away peacefully at home, with her cats sleeping on her feet, on February 24th, 2023. 

The team at the Duke ABMT program were some of the most caring, compassionate, and hardworking medical providers we have worked with throughout my mom’s illness. It was important to Ilene to connect with and support others as they went through similar medical challenges. Therefore, I have created this fund, which will go toward the patient fund in the Duke ABMT program. The funds contributed in Ilene’s memory will go toward supporting patient needs as they undergo stem cell and bone marrow related medical procedures. 

Thank you for your unwavering support of our family during this time. Ilene, we miss you and love you.

Come on Ilene…At this moment, you mean everything!

Love,

Ava Nusblatt