Covering Carolyn's Costs for Groundbreaking Clinical Trial

Dear friends & community,

Summary

I have been living with metastatic breast cancer (MBC) for over 6 years and many of you know me because I have been running North Star Cancer Advocacy as a 501c4 for just over two years now. I am asking for help to build a little more cushion into my personal budget for the next six months because it is very, very tight leaving me no financial room to go out and enjoy the world.

What’s New

North Star Cancer Advocacy was officially launched in Feb 2022. I have sought to provide information & education without much overhead cost. As an organization, we have done very little fundraising for administrative costs. And most of our fundraising was done via direct donations to Dr. Isaac Chan working on Natural Killer cell research at UT Southwestern. I don’t draw a salary.

I live on the $943 which federal SSI provides me each month + food stamps + donations made to me personally. I moved to San Antonio, TX in July to participate in a clinical trial. Living in San Antonio has helped my money stretch farther as the cost of living is lower here, but as you can imagine my budget is still super tight. I don’t have enough money for more than 1 tank of gas a month. Up until last week, I owned 1 pair of shoes … I have lived very frugally.

Last week my scans finally showed, after 18 months of progressions, some stability/cancer regression and so I am ready to take some bigger leaps with North Star.

But there is a small fracture again in my pelvis where my hip was replaced in December 2022. So Iast month, my orthopedic oncologist advised me to stop my daily (40-60 min) walks in the park across the street. Not walking regularly has gotten me out of pain (thankfully) but it ALSO has me feeling couped up and I would like to get out & live a little more while I have some cancer regression & before the Texas scorching heat starts up.

These donations will help me have a little bit more cushion in my food budget for the next six months, get the transmission on my 10-year old car serviced, and give me some extra gas money for the occasional day trip to a scenic spot/state park.

Plus I am also hoping to buy a lamp for my bedroom where the light is too dim, a few plants for my empty porch and get a pedicure (the muscle spasticity in my torso makes it difficult for me to reach my feet for any length of time).

In November 2022, I was facing a 20% increase in my Chicago apt rent and a pending hip fracture due to cancer-(I had no clue how I was going to survive & make it through and wasn’t sure I wanted to-things felt so dire). I did some fundraising that helped me find a cheaper place in the Chicago suburbs to recover from hip surgery and helped me afford the move to San Antonio in July 2023. That fundraising carried me for the last 18 months… I would not have been able to carry on and resettle without it.

If you would like to help me out again-personally- to help me build a little more cushion into a VERY tight budget, I would be ever so grateful.

In the meantime, serious planning is underway to form a 501c3 non-profit structure: North Star Cancer Clinical Trials.

501c4 non-profit structures are much, much cheaper to set up but they don’t allow for tax-deductible donations and so it’s time to set up a structure that can provide tax-write offs to people who can afford large donations.

North Star Cancer Clinical Trials will work to initiate pilot trials that Pharma won’t pay for like:

-dysbiosis screening/intervention as intestinal dysbiosis is showing links to breast cancer development and accelerated metastasis

-potassium bicarbonate to slow down bone Mets

-cytokine monitoring for cancer progression and treatment response

-MHC immunohistochemical tumor testing to help people find immunotherapy clincial trials more likely to work for them.

Intestinal dysbiosis is being shown in pre-clinical research to be an additional breast cancer risk factor both for primary and metastatic breast cancer. But the translation of pre-clinical science into clincial practice for primary and metastatic breast cancer is far too slow. Hopefully, North Star Clinical Trials can help to speed that process up for clincial interventions that do not require new drug development.

Your donations to me personally will help me stay afloat while I work to launch this new endeavor.

Gratefully,

Carolyn Leigh