Fulfilling Aameer's wish through

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Aameer Sahi - Forever in our hearts

1998 - 2019

Aameer Sahi (1998–2019) was a legend. Ask his family, ask his friends—heck you could have even asked Aameer. He was passionate about sports, none more than basketball. There wasn’t a shot he couldn’t make, or rather, take, and he made sure to tell you about it.

Aameer was diagnosed with neurofibromatosis (NF) as a child. He had his first major surgery in November 2017 to remove a softball-size tumor, and in the summer of 2018, he had another surgery to remove a golf ball-size tumor. Following the last surgery, Aameer was in a tremendous amount of pain. Unable to walk or move, his doctors prescribed a pain management plan. The doctors were unsure what was causing the pain, so in November of 2018, Aameer and his parents insisted on an MRI. A tumor the size of a football was found and removed. Unfortunately, the results of the pathology report revealed that the tumor was malignant, and in December of 2018, Aameer was diagnosed with Malignant Peripheral Nerve Sheath Tumor (MPNST), a form of sarcoma. Sadly, Aameer passed away on August 12, 2019, after an eight-month battle.

Aameer lived life to the fullest. He loved unconditionally and brought laughter and light to every room he entered. He had a way of bringing out the best in anyone who was lucky enough to know him. Aameer always had time for his family and friends, whether they needed an ear to listen, a pat on the back, a joke to cheer them up, or a motivating kick in the butt.

Aameer believed in helping others. His final wishes were to find a cure for MPNST, reduce suffering, and help others as they fight life-threatening sarcomas. During his eight-month battle with cancer, Aameer started a fundraising campaign to support both NF and sarcoma research. Together with his family and friends, Aameer raised thousands of dollars.

Aameer is our inspiration and northern star as we continue his legacy—one patient and one family at a time—until we can fulfill his final wish to find a cure.

Together we are powerful. Together we can beat this disease. Together we are #SahiStrong.

Support

Giving to patients (ages 18-24) currently undergoing cancer treatment

We learned the importance of support from Aameer’s journey as we spent day after day beside him in the hospital. It is extremely important for young people to have their loved ones present to help them stay mentally strong and provide social interaction throughout treatment.

We know from experience that when hospital stays become essential in a patient’s journey, there are many unanticipated expenses that place an additional burden on the family, such as parking, food, hotel stays, and incidentals. For young patients, hospital stays due to sarcoma can be lengthy, which means long stays for family and friends as well. The last thing patients and their families should worry about is multiplying expenses; They need all of their strength and focus to continue to fight.

In Aameer’s honor, we have partnered with Northwestern Memorial Foundation’s Adolescent and Young Adult (AYA) Oncology Patient and Family Assistance Fund for patients between the ages of 18 to 24. Funds donated are given to patients to help with any incidental costs incurred by themselves, their family, or their friends.

We believe this small gesture will help bring hope, light, and love into the journeys of adolescent and young adult cancer patients and their families.

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Research

Helping to fund cutting edge sarcoma cancer research

Sarcoma, cancer that forms in the bones and connective tissue, is rare among adults, but comprises roughly 20% of all childhood cancers. Malignant Peripheral Nerve Sheath Tumor (MPNST), the type of cancer that Aameer battled, makes up only 5–10% of all sarcoma cases, occurring in 0.001% of the general population.

MPNST is a cancer of the cells that form the sheath that covers and protects peripheral nerves. Peripheral nerves are those outside of the central nervous system (brain and spinal cord). This cancer grows in the soft tissues of the body, such as muscle, fat, tendons, ligaments, nerves, and other tissues that connect and support the body.

MPNST is most common in young and middle-aged adults, particularly those with a genetic condition called neurofibromatosis type 1 (NF1). About 25–50% of people with MPNST have NF1, and about 8–13% of people with NF1 will get MPNST in their lifetime. MPNST is known to be an aggressive cancer and has a low survival rate, especially for those patients who have reoccurrence of a tumor.

Our goal at ASF is to bring more attention to MPNST and increase the funds dedicated to research and clinical trials. ASF will do so by donating funds to:

  • Current clinical trials with a focus on MPNST
  • Future research projects
  • Raising awareness of the need for more clinical trials and research

We believe all three—trials, future research, and awareness—are equally important in the fight against sarcoma.

We are excited to announce that ASF has sponsored its first clinical trial in partnership with Northwestern Memorial Foundation. This is a first-in-human trial to test novel proton therapy for patients with retroperitoneal sarcoma (RPS), a group of soft-tissue sarcoma afflicting 1,000-2,000 patients annually with a five-year median survival of 50%. The trial will use spatially fractionated proton therapy (P-SFRT), which is a transformative innovation that integrates proton therapy with SFRT. SFRT is a technique that delivers high-dose radiation beams arranged in a grid of peaks alternating with lower- dose valleys. While radiotherapy is critical to soft-tissue sarcoma treatment, its effectiveness has been limited with RPS where organs like bowel and liver make giving adequate doses challenging. This trail is hoping that P-SFRT will overcome these limitations which will lead to better outcomes for these
patients.

For an up-to-date list of clinical trials available, please visit ClinicalTrials.gov

Please note: Studies found at ClinicalTrials.gov are listed for informational purposes only and do not reflect an endorsement by ASF. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

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Advocacy

Improving patient care to include comprehensive mental and emotional support

Aameer was a healthy, vibrant young man and the center of his family. He attended DePaul University in Chicago, where he was manager for the men’s basketball team, the life of the party, and trusted confidante to his friends. That all changed when he began to feel pain in his leg, which led to the discovery of the first tumor when he was just 19 years old.

What we learned from this life-altering diagnosis, and Aameer’s battle with cancer, is that 18 to 24 year olds fall into a peculiar category: they are not considered pediatric patients as they are legally adults. This means that they are treated as such by the medical staff and the additional emphasis on social and emotional support available to pediatric patients is not readily available to them.

Aameer was an emotionally mature young adult, but in his time of crisis, he still needed more mental and emotional support than he was offered by the medical system. He often felt a sense of defeat and irritation as medical staff explained his treatment plan, only to be told days or weeks later that the plan wasn’t working. We learned firsthand how crucial it is to have comprehensive support during this process. We are thankful that Aameer had a large extended family, a close group of friends, and teammates, coaches, and faculty who were there for him every day. Their love and support kept him fighting. In his seven months at the hospital, we also learned that not everyone has such a large and dedicated support system.

Our goal is to help connect patients with the social and emotional support they need. We do this by advocating for greater involvement of social workers throughout a patient’s journey and by connecting them to support groups so they don’t feel alone in their fight.

We believe that caring for a patient’s mental, emotional, and social needs is as vital as physical care in their battle against cancer.

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Together we can work to change the future for young adult sarcoma patients.

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We wanted to share the impact ASF is having on the lives of a few of the patients that we have helped.

  • A female patient that was diagnosed with stage 3 lymphoma asked for funds to pay for the cost of her egg retrieval as due to chemotherapy there is a risk in her ability to have kids after treatment.
  • A male patient that was diagnosed with soft tissue sarcoma requested funds to help with cost of living. He is a college student who is receiving treatment while trying to remain in school.
  • A female patient that was diagnosed with a grade 3 brain tumor, she is a recent law student graduate who requested funds to help with cost of living while receiving treatment.