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About Betty’s Journey

BETTY’S STORY

In 2012, Betty began having falls that neither she nor her family thought were anything more than a couple of random trips. Except they kept happening, & more frequently. Eventually Betty saw doctors, physical therapists, orthopedics, then surgeons who performed a knew replacement, more PT & so on. For 2 years this went on until finally, in 2014, Betty was referred to a “Neuromuscular Multidisciplinary Clinic” (remember that term) where she received the diagnosis of ALS.

This delay from symptom onset to diagnosis is regrettably common in ALS & it urgently needs reform. Except for the limited # of ALS specialists in the US, there is a lack of awareness & up-to-date clinical education. Today there are 4 FDA-approved therapies indicated for the treatment of ALS.

They are not a cure, but they each slow disease progression in different neurological pathways. And combined, they can add time that is far too precious once you are two years into a disease w/ a mean life expectancy of 2-5 years. As if things couldn’t get worse, the associated medical expenses are astoundingly high – estimated between $120k to $200k per year. It doesn’t seem possible? Betty & her family thought that too. Yet in less than 4 years, her medical & caregiving costs exceeded $500k. Then the day came; their $ was gone.

To learn more about ALS, early warning signs & the expenses thrust upon pALS, cALS & families, please visit our website at www.BettysBrigade.org If you don’t/haven’t already known someone living w/ ALS, statistically, the odds tell us that you will within your lifetime. If you do, we pray that it is not the “Betty” in your life. But ultimately, let us never forget that every person diagnosed w/ ALS is someone’s “Betty”.
“There but by the Grace of God go I”.

About the Betty’s Brigade Foundation

The Betty’s Brigade Foundation is a 501c3 charitable organization founded in 2022 to both honor our mom, Betty Collins, and to pay it forward for all that others did for Mom & for our family during her courageous & inspiring battle against ALS.

Our Board of Directors

Senda Ajroud-Driss, MD Ron Badon Tim Bobillo
Chicago, IL Orland park, IL West Lafayette, IN
Joe Collins Maureen Collins Patti Collins Morgan
St. John, IN Oak Lawn, IL Atlanta, GA
Sheila Cunningham Rob Cunningham Dan Curley, Jr.
Evergreen Park, IL Lemont, IL Western Springs, IL
Steve Gardner Jill Langer, NP Amy Lapinski
Skokie, IL Knoxville, KY Frankfort, IL
Dayna McAdams, RN Misty McMichael Tim Pufunt
Nashville, TN Lemont, IL Oak lawn, IL
Tim Quinn Kelly Salzburg Julie Stowell, RN
Oak lawn, IL Chicago, IL Chicago, IL
John Tobin Jim Piko, Jr. *Richard Bedlack, MD
Seattle, WA Orland Park, IL Durham, NC

Our Mission Statement

To raise ALS awareness, accelerate the diagnostic process & to raise funds for people living with ALS (pALS), caregivers for those living with ALS (cALS) as well as ALS clinical research.