Dad Our Warrior

It’s now been over 7 years since we lost our dad “Sandy Cameron” to ALS. Boy was he a proud Scotsman. He was long on discipline and proud of his military service in Canada. Neither Iain or I followed in his footsteps but we were gifted (😊) with his passion to ne’r back down. He dealt with his diagnosis the same way. We were so fortunate to be able to spend time with dad over his last few months… so glad that we did… the talks and hugs were heartfelt and real. A lot of previously unspoken pain dissipated and was forever healed. We now carry his memory and his lion’s heart in our support of Augies Quest to help find a cure.

Iain Duncan and Scott Cameron

The day we first met we were in Manchester, New Hampshire. I had just arrived at the Obama NH campaign headquarters. Brian had been part of the New Hampshire campaign staff for a while as political director. I met the team at a staff picnic in the park. Brian was playing a game of catch, and my first reaction was: there are cute guys here! I noticed him right away.

I was the communications director for the NH campaign and that meant I worked closely with Brian in his role as political director. We were paired up often for work. When you work on a campaign, you work from the wee hours of the morning to late into the evening. In those beginning days before we had a real headquarter building, we worked out of what we called the “hoffice” (the home office) because it was one of the group homes where seven of the staff members lived, including Brian. One day, maybe about a month into working together, Brian and I were sitting with our laptops at the kitchen table across from each other. I sent him a message saying he should date me because I’m really funny. He burst out laughing.

Our first date we went to a restaurant and Brian showed up an hour late! Of course he blamed work. I remember the server looking at him when he finally showed — she looked back and forth from me to him and said to him: “You better be worth it.”

We were working constantly but at the end of day, we were ready to decompress together at a local watering hole. We worked hard, but gosh we had so much fun. For both of us on the Obama campaign, we had this feeling like we were part of history and also making history together — it was such an energizing and fun period.

After Obama won the election, Brian had the opportunity to work within the administration right away, but decided to go practice as an attorney with Skadden in New York. He had been a summer associate at the law firm before the campaign and they had held the job for him. I had been living and working in DC for years, most recently as Press Secretary for Senator Durbin.

So Brian came to live with me in DC as he had a few months before he started that job. And at the time, I was waiting for the administration transition to be completed. We had this time together, both of us in DC. We went to the inauguration together, the balls and all the celebrating that went into the change of administration. It was a special time.

We had been long distance for about a year and half with Brian in New York and me in DC. At the time I was working as Arne Duncan’s press secretary in the Department of Education. Brian asked for a transfer with his company, Skadden, and was able to move to DC. We were again working and living in DC together.

After about six months, we both ended up moving to work in the White House at the same time. We literally started the same week and just like the campaign days, it was fun to work at the White House together. Our colleagues used to tease Brian and I as we walked laps around the hallways to chat.

After about four years of dating, Brian proposed. We were in Cape Code to attend a friend’s wedding. He proposed on the beach; it was special because this was the place he grew up coming to as a kid. Shortly after we were engaged, I took a job in my hometown of Chicago running an education nonprofit and we did another year of long distance.

We were married in 2013 in an epic wedding in Turkey where both my parents are from. Brian then left his role in the White House and relocated to Chicago through a role with Skadden. We welcomed our first daughter in 2015 and almost exactly two years later our second daughter.

Through a decade and a half, Brian and I have got to experience so much together. We have really been there emotionally and physically for each other, always taking care of each other.

-Sandra

Our Love story begins way back in Costa Rica in 1991.  We met thanks to Hurricane Andrew as Simon (from Miami) was visiting Costa Rica on business.  His stay was fortuitously extended because of weather conditions. Long story short, we were introduced at my grandfather’s 75th birthday and it was love at first sight! Two weeks later, we reunited in Miami and married a year later in October of 1993!

Fast forward to today…27+ years of marital bliss –  most of the time 🙂

We have two amazing kids, Alexandra and Daniel and our four legged child, Samba!  In 2016 we motived something strange was happening with Simon’s foot and our diagnosis came shortly after.  ALS does NOT stop us. We embrace change as it comes. We are blessed to have the unconditional love of family and friends.

We thank God for each day.  Yes, we have hard days but we are reminded each day that we are blessed to have each other, our kids, our family and our friends. F.U. ALS! You have no idea who you are messing with!

XOXOXOXOX,

Diana

“I was made to love you”

We met on the campus at the University of Alabama, dated a bit, and kept in touch after we parted ways.  We reconnected years later in Atlanta.  He joined my church in the morning, and we were engaged in the evening.  He asked me to marry him at a concert under the beautiful stars to one of our favorite artists singing… “I was made to love you.”  Our wedding was a fairy tale, and we will celebrate our 18^th wedding anniversary on February 15.  We are blessed with 5 children.

Kerry was diagnosed with ALS in July of 2015, and ALS has changed our lives tremendously. We don’t say “negatively” because we are truly blessed with a new community of friends to add on to our amazing existing family and friends.  ALS has brought our family closer together. We truly cherish each moment that we have.  We don’t look at how much the disease has robbed us from, but we make each millisecond count.  Our love endureth all things

My friend of six years needed my help and I ran to action with no hesitation. I took on the shared responsibility to help him take care of his mother who has ALS. Her name is Luz Hiraldo. She is 52 years old and she was diagnosed in 2017. You can say we’re cosmic friends. LOL. I help during the day with the sun and he rolls in with the moon. My love has grown over the years for her I see her as my mom. This disease has taken so much from so many, but love will win over this disease. Thank you, Luz, and love you…

-Ameer

“My dad, George, loved to run. He ran at twilight, when the chorus frogs sang in the wetland near our house. Sometimes he ran in the morning before work — alone or with friends. Never with music, and always outside. He told me that it was his prayer, his daily meditation. Dad taught me how to breathe when I ran. Slowly in and slowly out at an even tempo. He showed me how breath carries you down the trail, and can buoy you through discomfort and exhaustion.

Breath isn’t just life — it’s gratitude. Every inhale and exhale is a quiet hallelujah for your existence. When my dad could no longer run, he walked with forearm crutches. Each step required so much effort that his face would twist in a pained smile — exhausted from the effort, yet grateful to still be on the move. A year passed this way, before even those steps became too much. In the final months, when a hospital bed occupied the dining room and dad’s clothes swallowed his skeletal frame, he would spend hours on the back porch, eyes tracking the songbirds who congregated at his feeders. Especially then, my dad’s breath carried him through the day.

I write all of this to say that my dad was so much more than this disease or a number. He was a runner. He was a reporter and a writer whose bookshelves were lined with poetry anthologies and David McCullough. He was a deeply spiritual man who saw the beauty in every sunrise, every bird song, every beautifully ripe tomato in his garden. He showed me how to move through this world with such grace, even when the hand you’ve been dealt isn’t what you envisioned. George is everywhere to me. I feel his presence when I walk the dog at dawn and hear Cat Stevens’ “Morning Has Broken.” I think of him when I smell coffee and cinnamon and newsprint. I carry him with me, in each breath and step that I’ve been given.

-Laura

“My mother, Dianne, was diagnosed with ALS in July 2018. She has been in hospice at home for 2+ years and continues to defy all expectations. Her quality of life is currently very low (she is fully non-verbal and non-mobile), yet every person lucky enough to visit leaves feeling as if they’d been enveloped in a warm hug of unconditional love. That is her superpower. People gather around to celebrate her (in person and virtually) yet—even with this ALS reality—she still takes care of us.”

-Elizabeth

My dad was diagnosed with ALS in 1998 when I was six-years-old.  My strongest memories are from when he was sick, but I’ve learned great stories through family and friends.  My dad was the life of the party; handsome, stylish, athletic, always smiling.  I gotta admit, I love when people say they see him in me… I mean, it’s a total compliment haha!  I was only 13 when he passed away, but we squeezed many happy memories into those years and I know I’m the person I am today because of him.

My dad was a great coach.  My main sport growing up was competitive cheerleading and while he didn’t coach my team I was lucky to have his guidance and advice.  The sport required a lot of travel to competitions.  Looking back I’m not sure how my mom and dad pulled it off.  They are both superheroes.  Road trips, airport security, flights, hotels… all so much more challenging with an electric wheelchair and ALS.  My parents were thoughtful and extended many of those trips into family vacations.  I think they knew the years were limited and wanted my sister and I to have those experiences while he was with us.

Part of me feels lucky I was a naïve adolescent when my dad was sick.  I didn’t fully understand his prognosis.  But, lucky isn’t the right word.  Just because I was young it was still grueling.  No kid should be growing stronger while watching a parent get weaker.  It’s not fair and I do not want any more families to be affected.  We need a cure.

A month before my dad died he wrote me a letter I will cherish forever.  In the fall of eighth grade we were assigned a time capsule project.  We wrote a letter to our twelfth grade self and gathered letters from friends and family that would be sealed and remain in a vault until senior year of high school.  After he passed I thought about his letter every day.  He typed it on his laptop with a switch wedged between his thigh and chair.  Thank goodness technology has advanced since 2005.  His final sentence read in part, “I am so proud of you for so many things. I hope that during your high school years you took advantage of every opportunity to better yourself for your college years. Have fun and keep making me proud. I love you, dad.”

-Katie

1984, I went to a friend’s birthday party hosted by another mutual friend, it was my senior year in high school. I had known Meg since our freshman year through band. Meg’s mom always said, “Juan came to a birthday party and never left.” She’s right, it’s a party every day when you find your one. This has been most evident since my ALS diagnosis.

Meg has been at my side every step, every moment. We have four children, our three youngest are adopted. Imagine finding your forever family then finding out one parent has ALS.  It’s devastating. Why do I share this? Because love stories include more than the couple, but the whole family. Meg’s my one not because she loves me and I her, but because our love embraces more than just our hearts.

I am married to my high school sweetheart, but more importantly I am married and will spend the rest of my life with my one and only. I love you Meg, in this giant puzzle of life you are the first and last piece.

-Juan

If you were to ask me years ago why I would be fighting for ALS, I would have told you it is for my Dad who was diagnosed with ALS at the ripe age of 41. I would have told you I wanted to find the cure for my father, I wanted to end this disease to save my family, to save my hero, to give me a “normal life” I felt robbed of when I was 18.

My father was a man of very few words. He was stubborn (sorry mom but I think that’s where I get it). He was unbreakable, so we thought. He was not only the motivation behind my determination and competitive nature but showed me what it was like to live regardless of the hand he was dealt. He’s the “why” behind the races I’ve run, the money I’ve raised, the places I’ve traveled, to feel seen and heard in the ALS community, and two businesses I’ve started. Little did I know that years later, I would one day do all of this for everyone and anyone who has been affected by ALS.

We need a cure. This community is unstoppable, but we need a cure.

-Christina