About Us
Founder: Thomas Howard
Inspired by: Sheila’s ongoing fight and survival
Our Mission
Our mission is to fund genetic testing and clinical‑trial travel for lung cancer patients who would otherwise be left behind.
Fill the Gaps in Lung Cancer exists to remove the financial and geographic barriers that prevent patients from receiving timely biomarker testing and accessing life‑saving targeted therapies. Guided by Sheila’s 8‑year fight and survival, we champion earlier detection, persistent mutation testing, and the travel support patients need to reach clinical trials—no matter where they live.
“We’re not just raising awareness—we’re raising access.”
The fight that inspired a movement!
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Surgery: Remove left lower lobe of lung
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Number of genetic tests completed - 5
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NRGI Fusion positive 2019
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HER2 Positive 2025
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Clinical trials participated in- 5
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Cancer Centers: UC Irvine, Cedars Saini, UCLA, Sloan Kettering (NY)
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Number of prayers: You can't imagine!
Sheila’s Story
My wife Sheila was diagnosed with stage 4 lung cancer in 2018. Thanks to access to top cancer centers and clinical trials in Southern California, she’s still thriving. Fill the Gaps in Lung Cancer aims to offer similar opportunities to those without such access.
The Gaps That Cost Lives
Delayed Diagnosis
Sheila’s persistent cough was misdiagnosed for over a year. A simple chest X-ray—ordered far too late—revealed a tumor that had been growing silently for 15–20 years. "If annual chest X-rays were standard, she might be cancer-free today.”
Incomplete Genetic Testing
Initial blood tests showed no gene mutation. Only after multiple rounds—including tissue testing and advanced lab techniques—was the NRG1 gene mutation discovered. “The first test missed it. The second missed it. The third missed it and finally the fourth found it..”
Unequal Access to Clinical Trials
Sheila had access to cutting-edge trials in Southern California. Most patients don’t. Geography should never determine survival. “We want to fund travel for patients who live in places with zero trial access.”
Only 3–5% of adult cancer patients participate in clinical trials—mostly due to access barriers.
Our Solution
Four Programs to Fill the Gaps
1. Early Detection
Promote annual chest X-rays for early detection.
2. Genetic Testing
Educate on early and repeat genetic testing.
3. Clinical Trials
Promote Value and fund travel for patients that live away from trial access.
4. Sheila’s Signal
Share personal stories to drive awareness and policy change.
“Sheila’s fight continues. So does our mission. Let’s make sure no one falls through the cracks.”
Average Stage at Diagnosis
Most lung cancer is detected at Stage IV, when survival is lowest.
Routine Chest X-Ray
Chest X-rays are less sensitive than LDCT for detecting early-stage lung cancer. Studies show they don’t reduce mortality in high-risk groups LDCT scans can detect small nodules and tumors earlier, improving outcomes.
It took 15-20 years before Sheila developed symptoms from her tumor-One chest x-ray during year 1-18 and Sheila could be cancer free.
Nearly half of NSCLC cases are diagnosed at Stage IV, when the cancer has already spread.
Advocating for expanded screening criteria or pilot programs in underserved populations.
Pushing for research into alternative screening pathways for non-smokers or low-exposure patients.
Biomarker Testing in Lung Cancer
What the Data Shows:
• 83% of advanced NSCLC patients receive some biomarker testing during treatment.
• But only 66% are tested before treatment begins.
• Most patients receive a single round of testing, often limited to a few common mutations (EGFR, ALK, KRAS, etc.).
• Comprehensive testing (including RNA-based or next-gen sequencing) is not routine, especially in community settings.
(Source: AACR Cancer Research Abstract 3426, 2024)
More Testing
If initial testing is negative, repeat testing is rare unless:
• The patient is at an academic center.
• The oncologist suspects a rare mutation.
• The patient or caregiver pushes for it.
• RNA-based testing (which found Sheila’s NRG1 mutation) is not standard and often requires special lab access or advocacy.
Many actionable mutations—like NRG1, RET, MET, and NTRK—are missed in first-line testing.
Patients who don’t get retested may be denied access to targeted therapies or trial.
When Biomarkers Aren't Found
Most lung cancer patients only receive one round of biomarker testing or none at all.
• 83% of advanced NSCLC patients receive some biomarker testing during treatment.
• But only 66% are tested before treatment begins.
• Most patients receive a single round of testing, often limited to a few common mutations (EGFR, ALK, KRAS, etc.)
• Comprehensive testing (including RNA-based or next-gen sequencing) is not routine, especially in community settings.
Source: AACR Cancer Research Abstract 3426, 2024
Only 7.1% of cancer patients participate in trials—location is a major barrier
Clinical Trials
What 7.1% Really Means
• Clinical trials are open and actively recruiting, but most patients never reach them.
• Barriers like geography, awareness, eligibility confusion, and provider bias prevent participation.
• Trial slots go unfilled—especially for rare mutations, underserved populations, and rural patients.
Up to 40% of cancer trials fail to meet enrollment targets.
• Only 1 in 20 eligible patients ever enrolls in a trial.
[Source: ASCO, JAMA Oncology]
Sheila got into multiple trial because she had proximity.
• Most patients don’t have that chance—even when trials are open and waiting.
Our Partners
Join us in filling the GAPS
Lung cancer patients shouldn’t be misdiagnosed, under-tested, or left behind. Sheila’s story proves what’s possible when persistence meets access. Help us make that possible for thousands more.
Ways to Support:
Fund our launch
Sponsor a patient
$500 = one travel stipend
Amplify our message
Partner
Partner on campaigns and outreach
If you have Cancer and need Funding or Clinical trial information-Contact Us.
Donate
Genetic Testing
Based on test and insurance coverage.
Price Range
$100 to $3,000
Travel cost for 1st stage of clinical trial (3 visits)
One trip every three weeks
Price Range
$9,000
Travel for Clinical Trial Visit
Travel cost per clinical trial visit
Price Range
$3,000
Assistance with Insurance Co-Pay
Based on funds available
Price Range
Varies
Corporate Sponsors
Bronze
$ 100,000.00 Donation
Silver
$ 250,000.00 Donation
Gold
$ 500,000.00 Donation
Platinum
Above $500,000.00
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Let's Fill the Gaps in Lung Cancer
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Cover a patients full trip to start a clinical trial-airfare, hotel, taxi food per diem
$3,000
Cover a patients travel for stage one of a clinical trial, three travel visits
$9,000
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