Today we’d like to introduce you to Pam Baker.
Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
I actually have two stories that might work for your purposes but I know that my cystic fibrosis story is the one presented to you so here is that one in as much of a nutshell as possible (as it spans 20 years). Our first child was born in 1999– a healthy baby boy (or so we thought). Life was good, all was well (aside from ear and sinus infections) until he started on solid foods at six months of age (he was strictly breastfed until that point). Once solids were introduced, Gavin started having major digestive issues causing him great pain (to the point of vomiting and even passing out from the pain) and 8-11 bowel movements every day. Long story short, after firing seven pediatricians, going through multiple specialists, Gavin being treated for everything from celiac disease to lactose intolerance to ulcers and being threatened to be blacklisted from the medical community for being a “hypochondriac-style mother”, Gavin was diagnosed two years later (by me!) with cystic fibrosis.
CF is a genetic disease affecting all mucus-producing cells in the body (respiratory, sinus, reproductive and digestive) which was the reason for his chronic ear and sinus issues and also the cause of his pain when eating – he was malabsorbing all of his food. It’s also a life-shortening disease (the life expectancy at the time was 32) and has no cure. I was six months pregnant with my 2nd child by that point, so decided to have an amniocentesis to determine if my baby would be born with cf and, sure enough, he was diagnosed in utero. Our lives were shattered at that point after having both of my babies essentially given a death sentence. CF is a labor-intensive disease which required several breathing treatments and chest physiotherapy daily (to keep the lungs clear of thick, sticky infection-causing mucus), about 50 pills/day (super challenging with babies and toddlers!), nasal lavage to keep the sinuses clear and pushing nearly 4000 calories/day to keep their weight on in addition to their compromised immune systems.
After our learning curve on how to care for our boys, my husband and I almost immediately reached out to the CF Foundation to see how we could help. We knew that the only way to protect our hearts and our sanity was to find a cure as fast as possible. The boys were diagnosed within a 3-week period over late February/early March and the Great Strides Walk for cf was taking place in May. We formed a team (the Baker Boys’ Battalion), wrote letters, shared our story and recruited our friends and family to join us on walk day. That first year, with zero fundraising experience, we became the #1 fundraising team in Georgia by raising over $30,000. We’ve continued that fundraising by moving beyond just letter writing over the years. We soon realized that writing letters wouldn’t be the best strategy to keeping people in our fight for the long haul so we started what we coined “passion fundraising” – taking something that you love to do and turning it into a fun way to raise money. We’ve done many events over the years but our signature event was started in 2009, called “ShamRockin’ For A Cure”, which has now become one of the most well-attended, popular St. Patrick’s Day parties in all of Atlanta. We’ve even had sister cities involved in Chicago, Vermont and Annapolis, MD. Collectively, SFAC has raised over $4M and continues to raise nearly half a million dollars each year. Because of SFAC, we have had another really incredible event spin-off from that concept called “Smokies GT” where car enthusiasts, specifically those who own Porsche GTs, come together for a 4-day event each year. Smokies GT also raises nearly a half a million annually.
Collectively, the Baker Boys’ Battalion has raised over $7M since diagnosis in 2002 and have remained the #1 fundraising team not only in Georgia but in the entire Nation for nearly a decade. We have also taken on numerous leadership positions both locally and nationally so have been able to impact the broader audience in the cf world by teaching fundraising skills, advocating to Congress on behalf of those living with cf, supporting other families as they navigate living with cf and serving as a mentor and resource for others. This past March, while attending the CFF Volunteer Leadership Council in Denver, it was announced that the life expectancy for those living with cf is currently 56 – a true testament to our original concept that we need to raise the money that will fund the science that will ultimately find the cure for our boys and the 40,000 others living with cystic fibrosis. Currently, Gavin is 23 and Jake is 21 – both are living their best lives thanks to the hard work they put into their health every day and especially to the incredible research that has given us all a true sense of hope for a long, healthy future.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
What does a smooth road even look like?? There have been so many obstacles over the years from trying to get doctors to take my concerns for my child seriously to getting little ones to swallow pills every day to getting pushback from the CFF regarding passion fundraising (it was considered way too far out of the box thinking – but has now become as CFF standard) to those little babies turning into rebellious teens who refuse to do their life-saving treatments and, ultimately, to my husband, my partner in parenting, my voice of reason being diagnosed with glioblastoma (brain cancer) in 2018 and passing on in November of 2021 – leaving me to manage all of this crazy life by myself.
As you know, we’re big fans of you and your work. For our readers who might not be as familiar what can you tell them about what you do?
That’s a super loaded question. I think that most people consider me a person who is thrown a challenge who then takes that challenge and flips the script (as I like to say). I think my ability to see a need in whatever world I’m thrust into and do what I can to fill that need is something that I have become known for over the years. Some call it my superpower. I think it’s more of a coping mechanism to keep me from feeling powerless in sometimes overwhelming circumstances. Jon (my husband) and I definitely used that coping mechanism when the boys were diagnosed by activating the masses and making a true impact in the cf world and I’m now doing that in the world of widows. Since becoming a widow myself, I’ve realized that there is a huge need for widows outside of the traditional church support group realm so just a few months ago, I launched “Widows Who Wine”. We get together socially once a month and do everything from axe-throwing to “libations and learning” where we have empowerment series such as self defense and financial planning speakers drop some knowledge on us. Our group has grown to nearly 60 women locally in just three short months. Sixty women who have had no place to feel that they belong or that people truly understand the legit rollercoaster ride called widowhood. I’m really proud of both my work in the cf world and what I see already unfolding in the widow world.
Any big plans?
I am actually really looking forward to launching my podcast career and writing my first book. Throughout the process of my husband’s illness, we learned so much – especially after he died- so I am writing a book, along with my nephew (a certified financial planner) on how to best prepare for the inevitable loss of a loved one. With all of our resources, knowledge (my husband was also a financial planner) and the time we had to prepare after his diagnosis, there were still so many things that we just didn’t know we needed to plan for. I’m hoping this book will prepare others so that, while in the darkest, most traumatic stage of life, they aren’t having to make some pretty major life decisions at the same time. My podcast will focus on loss, as well, but from a different angle. I’ve learned that people, in general, are extremely uncomfortable with death, so once you lose someone, most people avoid talking about the person who died (at least after the initial first few weeks pass). I know it’s complicated because they don’t want to upset you or don’t want to get upset themselves but it feels like they are just forgotten and that’s the saddest part of all. I want my podcast to provide space for my guests to share their favorite stories, their love stories, what they miss about them but also how they are finding their way back to joy after loss. It will be a place to not only archive their love story (be it your partner, your child, your parent, your best friend – all the loves in your life) but also normalize loss and, most importantly, embrace the journey back to joy.
Contact Info:
- Instagram: bakereed (personal)
- Facebook: Pam Reed Baker (personal); Widows Who Wine (private group for widows)
- Linkedin: Pam (Reed) Baker
