100 putts for charity — and a reminder that “it could be worse.”
Today I am not going to write about my journey. Rather, I will tell the story of someone else’s – Skylar Friedman. Mine pales in comparison to Skylar’s, and it is a story like his that puts everything into perspective.
But first, let me say that the reason I am doing this right now is to bring attention to those who treat rare fetal illnesses and to raise money for a truly noble cause. One that Skylar and his golf pro, Adam Laird, started to give back to the Children’s Hospital of Philadelphia (CHOP) for the life-saving treatment that Skylar received there.
One reason I feel so connected to this charity involves the work I do in my day job. One of the most rewarding aspects of my job is having the privilege to work with world-class medical experts. Much of what I do involves complex science and medical issues, which our experts often teach me as we work together on the best way to present them to juries. The biggest reward, however, comes from the relationships I have built with these amazing and compassionate doctors who spend their days making a difference in some of the most difficult fields of medicine, including birth defects, fetal medicine, and oncology. Some of the doctors I’ve worked with in these areas have even worked at CHOP.
Another reason I feel such a connection with the charity is that it intersects with my fitness journey. Through my passion for golf, I have had the honor of getting to know Skylar, a 16-year-old boy who is a member at my golf club. Since birth, Skylar has been treated at CHOP his whole life for several medical issues including a lung mass discovered before birth, severe food allergies, asthma, a thyroid condition, and growth concerns. It took about seven years for Skylar to even begin turning a corner from issue after issue. Through the years, his mantra, “It could be worse,” helped him conquer the setbacks he experienced, and it continues to drive him today.
Skylar’s gratitude for the life-saving treatment he’s received at CHOP, drives him to give back, and he found a way to do so by combining it with his passion for golf. Skylar started a 100-putt challenge to raise money for CHOP’s Center for Fetal Diagnosis and Treatment (CFDT). Now in its 6th year, the charity, it has evolved to where others, like myself, can take part and raise money for their efforts.
My first year doing the Challenge was last year. Quite frankly, I worried for a charity that hinged on my putting skills, as people can choose to donate for every putt that is made (but thankfully, there’s also an option to give a lump sum). I proudly made 68 out of 100 putts and helped raise over $3700 of the $163,000 total that the Challenge earned in 2023. This year, I hope my blog can be a vehicle for raising even more.
So, for starters, my donations page can be found here: https://charity.pledgeit.org/100puttchallenge-24/@Aaron-Levine
Last week, I had the pleasure of sitting down with Skylar and his dad, Joel, for a Q&A session. Summarized below, I hope it provides you with insight into Skylar’s inspiring journey and the great work that this charity does.
Q. First, how are you doing today? How has your progress been over the years?
Skylar: I’m doing significantly better. I recently had a good appointment with my pulmonologist, and I have no major issues with my lung anymore. My asthma is now under control. For most of this journey, my progress has mostly been gradual. But the pace has increased over the past few years. This year alone, I was able to outgrow two more food allergies — eggs and sesame.
Joel: Early on, Skylar was thrown a lot of curveballs. First, the lung surgery at only 5 months old, then the allergies and asthma led to many emergency room visits. Then, Skylar was diagnosed with Hashimoto’s thyroiditis. Once that was diagnosed, things finally began to turn for the better around the time Skylar was seven or eight.
Q. How would you say your background and the medical issues you went through (or go through) contribute to how you define yourself?
Skylar: It has helped shape who I am. I am thankful for what I’ve gone through as it made me more caring and understanding of other’s experiences. Because of how grateful I am, I want to give back.
Joel: Skylar is being modest. He is currently writing a book about his experiences with the goal of simply trying to help others. He has gone through all of this with the motto, “It could be worse.” No matter what he’s endured, that’s how he’s approached it. It’s probably also why golf is the right sport for Skylar. He never gets rattled by a bad shot or bad round. It could be worse.
Q. One of the concepts, and mantras of mine that I discuss throughout my blog is to “Win the day,” meaning, did I do whatever it is I was supposed to do that day. The meaning is ever-changing, as each day is unique and we change from day-to-day. How would you say you handled winning the day as you faced your challenges in life?
Skylar: Two aspects shape how I define it — school and medical. For school, the work sometimes gets overwhelming, so the challenge is making sure I handle it all. I find the best approach for me is trying to break things down to smaller tasks and then just trying to focus on one task at a time. On the medical part, I guess it's actually pretty similar in that I just try to focus on the current issue and not let myself get overwhelmed by the bigger picture. Kind of a one step at a time approach. I think a good example of this is when I am undergoing a food challenge to try to overcome an allergy. Each challenge is done in the doctor's office and introduces small amounts of something I am allergic to into my system, one increment at a time. I just have to make it through each little bit of food, focusing on what my body is feeling at the time while not letting it get to my mind, all with the doctor and nurses monitoring me and checking my vitals for any signs of an allergic reaction. To give a little more context, let's pick my egg allergy. We started with a muffin recipe that had 1/5th of an egg per each baked muffin and my 1st dose was 1/32nd of that muffin. When I was ok with that after about 30 minutes, we moved up to 1/16th of a muffin. Another 30 minutes and then 1/8th of a muffin. We did that until I had consumed a full muffin. I failed that particular challenge (baked egg) twice, meaning I had to stop eating and medication was administered. I eventually passed it and, then a year later, we did a similar step-by-step, increment-by-increment challenge with a scrambled egg. The point is that, if I think too much about how long the whole challenge might take or how there might be many more challenges to go after the current one, it feels overwhelming. But if i just think about the current dose or increment, then it's a lot more manageable.
Joel: Food challenges for people with allergies are a long, drawn-out, grueling process. You have to do each food challenge on an empty stomach in order to be able to isolate the effect that is coming from something you have never eaten before. And there is no guarantee that you'll pass and not need an Epipen, which is scary. Like Skylar said, it took him three times just to pass that egg muffin challenge. And, since multiple food allergies are unfortunately very common these days, you might be looking at needing to do lots of those food challenge days. As a parent, you can't help but worry, but Skylar is a trooper, and he’s overcome many of the allergies. Very early on, he had 11 different food allergies, many of which were extremely severe. Plus, we are talking true food allergies that can cause anaphylaxis and death, not simply an upset stomach. Some of your readers might find it wild to think that, until he was 15, we never had eggs in the house. To illustrate how far he's come, Skylar's food allergy list is down to milk and tree nuts right now. They are still super challenging to navigate at times though; for example, Skylar has very sensitive skin and there can be milk proteins or derivatives in everything from body wash to sunscreen to detergent. Believe it or not, milk derivatives have occasionally been in medications (like an antibiotic or oral steroid), but thankfully we caught that before Sky took them because we are so vigilant. Skylar has never been to a restaurant in his life and always has his medications (epinephrine, Benadryl, inhalers) with him at all times, so it's a lot of responsibility for him. But, the hope is that, as his progress continues, we can try a restaurant where we talk to the chef in advance and carefully confirm all ingredients. By the time Skylar is ready to go to college, our hope is that he can at least get milk to a place where he won’t go into anaphylactic shock if he eats something that might have a small amount of milk in it.
Q. One of the topics I wrote about is overcoming setbacks. How have you approached this? Do you ever feel like you have been given more than you can handle?
Skylar: I approach it all with my mantra — this sucks, but it could be worse. Medical-wise, I have not felt I’ve been given more than I can handle. I know what the signs are, and I know what to look for. School-wise, all the time, but it could be worse.
Joel: As a parent, I’ve certainly gotten to that point, but then you get a reminder that puts things into perspective. One such instance was when Skylar was two, after going through the surgery to remove the lung mass, he was hospitalized for severe asthma. I distinctly remember thinking, “how much more is this kid going to be dealt? How on earth is this fair!?” But then Skylar ended up sharing a hospital room with another child who was mentally disabled, and I felt like such a jerk. It was like a punch in the jaw. What a visceral reminder of someone dealing with something far more challenging. This has just been our way of life. We don’t think twice about it. It’s just the way we live.
Q. Let’s talk about the 100-putt challenge. How did you come up with it? What do the donations support?
Skylar: It started when working with the golf pro at our course, Adam Laird. Adam was touched by my story and made this his charity for a golf marathon he did — playing as many holes of golf as he could over 24 hours straight. The first year, 2019, I helped Adam with his clubs and with counting holes — which wasn’t easy. The year after, I wanted to get more involved, but I knew I couldn’t do the marathon. So I tried to think of a challenge that I could do and I came up with the idea of 100 six-foot putts! That year, 2020, I made 82 and it became a mission to see how much I improved each year. The next year, I made 97 out of 100, which feels pretty impossible for me to beat. But along the way, we realized that anyone, anywhere can do this – on a putting mat indoors, at a golf course, or even on a floor with a cup. I've even seen people putting on an airplane aisle! You don’t even have to do them all at once. We just want people to realize, hey, I can do that! And they'll be helping to raise funds and awareness for the best children's hospital in the universe in the process.
This charity started as a golf marathon by our golf pro, Adam Laird, who has played golf for 24 hours straight, earning money for each hole played. Adam played over 300 holes in 24 hours, showing just how invested he is in helping others.
Joel: In 2018 when Skylar was still 10, he was a guest speaker for an event at CHOP, and Adam saw a video of it. Skylar had known Adam for years, and Adam had done the marathon before. But, as Adam learned more of Skylar’s journey and became inspired by it, he adopted CHOP as his charity of choice. That first year, donations went towards Addison’s Hope for Fetal Families Fund, which helps families who come to CHOP from all over the world by paying for things such as travel, lodging, and meals which are not covered by insurance. Adam felt a connection with that, as it was a tangible way to make a difference in other people’s lives. In year two, 2020, the donations supported a project that made it technologically easier to connect patients with loved ones who could not visit the hospital due to pandemic restrictions. Since 2021, the money raised has been used to support a CHOP project known as CODA — Clinical Outcomes Data Archive.
Skylar was motivated early on to give back, as he was a guest speaker at CHOP when he was just 10 years old.
Skylar: CODA was the priority project and brian child of Lori Howell, the former Executive Director of the Center for Fetal Diagnosis and Treatment who passed away in January after a long battle with breast cancer. In short, it collects data on outcomes of patients treated for rare fetal illnesses and uses it to develop better treatment options going forward. As described to me at one point, it’s like an electronic medical records system on steroids, all with the goal to help improve birth defect outcomes.
According to the CODA Fact Sheet, "The mission of CODA is to provide high-quality data to support patient counseling and research for rare, complex conditions diagnosed prenatally in the CFDT. With CODA, information that previously would take years to curate is now efficiently collected and validated in time with clinical care. This allows families and their clinical team to be armed in real time with knowledge from past patients of similar risk-adjusted-disease to make informed decisions and customized treatment plans. Additionally, clinical and translational research is expedited, significantly reducing the time required to obtain answers to clinical questions."
Q. How much have you raised over the first five years?
Skylar: In total, approximately $450,000. There’s been some real growth happening since the first couple of years. Our first year, we earned $17,500. Last year, we reached our highest total, $163,000 with twice as many individuals contributing as the year before and four times as many people actively participating by doing their own 100-Putt Challenge.
There are lots of ways that someone can do this. And it is fun!
Q. Who can sign up to do this?
Skylar: Anyone, anywhere!
Joel: The nice part about the 100-Putt Challenge is that it is not so grueling. The putting itself maybe takes 20-30 minutes. And it's fun! There's also a leaderboard on the site and we've heard some people say they want to see if they can post the top score for the year.
Me: Easily said when you haven’t seen me putt yet.
So, I’ll be taking my putting skills (or lack thereof) out to do the challenge in the next few weeks – likely in early to mid-September — and I am asking for your support no matter how small. This charity has made it possible for some children to receive world-class medical care when they otherwise would not have had the resources to do so. It now funds research aimed at improving the diagnoses and treatment of rare fetal illnesses. Having had the privilege of working with doctors from CHOP, I hope and believe that this charity can help those who are dealt some of the worst hands in life to at least come out of the experience saying, “it could be worse.”
Thanks for your donations! Together we can help Skylar, Joel, and Adam make a huge difference in the lives of so many others. Here’s the link one more time!
My first year, I made 68 out of 100 putts. Just missing my ambitious goal of 70. Please support my efforts this year to raise money for an important cause.
Blog update: I will be taking next week off from posting, as I am taking a much needed break here during a busy work week.
Aaron