Kip Heinzmann Keeps It Positive Fighting ALS
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A family with 3 young kids, devastated by a diagnosis no one knows how to handle. A man who refuses to accept the apparently inevitable and who works every minute to keep it positive.
Meet Kip Heinzmann. Kip is a long time media and digital professional who, because of ALS, is now out of work and needing your help. ALS, or "Lou Gehrig's Disease", has in the last two years wreaked havoc on Kip and Michelle's life. And things are getting worse. But you can help -- right now.
We -- Kip's family and friends -- need you. Imagine: losing your job because of a physical condition not controlled by you. Job, gone. Happened to Kip. Imagine: your kids freaking out, unsure about their future because they don't understand what's happening to their dad. Happened to Kip. Imagine: your wife not knowing how to take care of your physical needs and unsure of what the future holds. Happened to Kip.
And yet, Kip is unique. He is beyond upbeat. "Keep It Positive" -- an acronym for Kip -- is his attitude. Never down, always up. Looking to the future, not to the past.
And you can help this positivity flow. Our goal is $60,000 -- that'll fund one year of Kip's assisted living. He NEEDS this.
Please help. Literally, every single dollar makes a difference. Your contribution, no matter how small, goes to making this family have one less horrifyingly scary night wondering how bills get paid.
Thank you from the bottom of our hearts. Our goal for Kip is $60,000. Please watch the video for his own message to you.
Watch Kip’s 2019 ALS awareness video (2:00)
Finding out you have ALS
One day I was playing tennis and discovered I couldn’t jump at the net…something so routine. That was the first clue something was wrong.
Over the next several weeks my foot stopped working, I developed drop foot. That was worrying, but I still didn’t know the extent of what was wrong.
I next visited with a sports orthopedic surgeon, where they gave me an epidural, thinking that might help alleviate the symptoms. But there was no improvement. That doctor was the first one to notice that my muscles were twitching — an ominous sign — and he recommended I see a neurologist.
At the same time my primary doctor was focusing on rheumatology as a cause, thinking these issues might involve a muscle disease. But after many tests, the biopsy came back negative and that’s when we knew it was likely a more serious condition.
My neurologist didn’t diagnose me with ALS, but I remember one of his technicians telling me they were concerned about it based on my test results. They referred me to Dr. Jonathan Glass at the Emory brain health center and head of the Emory ALS Clinic.
After about six or eight minutes sitting across from him in his office, he told me his diagnosis. On June 27, 2017, about a year after the first symptoms appeared, I had the conversation I’ll never forget:
Doc: “Have you heard of Lou Gehrig’s Disease?”
Me: “Yes”
Doc: “That’s what you’ve got”
Me: “…OK”
Reaction to ALS
My immediate reaction, of course, was shock and I quietly began prioritizing my questions for him. I wasn’t surprised because I had been doing a lot of research on the web, but it was still shocking to hear those words.
After discussing it with Dr. Glass, it was clear I was somewhat fortunate — if you can call it that — to have slowly developing symptoms compared to many with ALS, and that I needed to make a plan to move forward as best I could.
Without ignoring reality, it was back to work and business more-or-less as usual day-by-day as my body would let me.
Development of KIP
It took about a year until I began embracing advocacy for those with ALS and the focus on a cure. I decided to start a team to raise awareness and raise money for the 2018 Walk to Defeat ALS.
The team name I chose was “Keep It Positive,” a play on my name, Kip I didn’t realize how that phrase would inject enthusiasm into the community and help me power through the next year. I had a logo created and T-shirts made.
A couple of months later at the ALS Association walk I’ve met people who said, “Kip — oh I know you! Keep It Positive!” Every day it helps me be energized.
Now, I have people sending me pictures from all around the world wearing their Keep It Positive T-shirts!
My outlook is, “I will not accept my outcome tomorrow based on yesterday. Yesterday is based on history, which is trends and tendencies. I’m not a trend or a tendency, I’m an individual case – and so are you. Look forward to tomorrow, live today, and Keep it Positive. “
My career
I was on the radio. I started in the industry as an on-air DJ, programming radio stations around the country and then I transitioned into a product strategist in the technology industry, specializing in media and marketing platforms and solutions. I love researching, synthesizing information and telling stories, which is coming in awfully handy now that I am an ALS advocate.
Progression of ALS
As I got into my second year following the diagnosis, I began having problems with mobility and my hand functions, particularly typing.
Ultimately it was those mobility issues that forced me to stop working. Each day, the idea of getting dressed and getting into the office was exhausting. It just became too much.
These last few months have really taken a toll on my body.
I use a walker all the time around the house and a power wheelchair to go outside. But my biggest frustration is the weakness in my arms. It limits my independence tremendously — I can’t dress myself or prepare food for myself, and recently, I had to stop driving.
Because of that, every day that goes by I am in need of more and more assistance. My focus has to be my individual safety, rest, and nutrition, or as I have come to know it, “safe, rest, eat.”
My metabolism has always been pretty high, but I’ve learned that ALS doubles it. So, to maintain my weight, I attempt to eat 4000 calories a day. And that is tough when I can’t prepare my own meals. I’ve come to know the taste of Boost milkshakes.
I don’t have anybody in the role of my individual caretaker, so I need to find a way to fill that void, and I need to lessen the responsibility and pressure that’s being put on my three kids.
My preference is to move into an assisted living arrangement so I have a access to a team to help me meet those “safe, rest, eat” goals…and also let my children be children.
My kids
Having three children ages 12 and under complicates things. In the past year, they have each gone through their own cycles of grief.
Meredith, who is 12, went through a phase where she was worried about leaving me at home by myself as my ALS progressed. She was so worried because I had hurt myself falling down a few times.
Lexi, 11, who is scared, of course, has started learning about and understanding ALS.
And Brody, who is 8, has struggled mightily. He is a little too young to understand how to explain his emotions or make sense of what’s happening to his dad. We love him and are very concerned about him.
Collectively they are scared, confused and worried. But we try to maintain as much humor in our lives as possible.
My wife Michelle
Michelle is a part-time teacher and has her hands full taking care of our three children.
She is focused on our well-being and works like crazy to bring in extra money whenever she can.
It’s overwhelming sometimes for her and for the rest of us. Young kids take energy, caring, and attention, and she is working hard to make that part of our lives work. But ALS is a 24/7 disease, and together we’re focusing on how to address it and plan for the future.
I never envisioned setting up a GoFundMe page. Probably few of us do. But it’s the only way forward for many of us with ALS. One lesson I’ve learned is that you have to be willing to take help from others gracefully and gratefully…and pay it forward as best we can.
I’m asking for your help. Please click the link to donate. It means more to my family and me than you’ll ever know.
Kip’s speech at the 2018 ALS Association Walk to Defeat ALS
Learn more about Kip at his website
https://kip-keepitpositive.com/
Meet Kip Heinzmann. Kip is a long time media and digital professional who, because of ALS, is now out of work and needing your help. ALS, or "Lou Gehrig's Disease", has in the last two years wreaked havoc on Kip and Michelle's life. And things are getting worse. But you can help -- right now.
We -- Kip's family and friends -- need you. Imagine: losing your job because of a physical condition not controlled by you. Job, gone. Happened to Kip. Imagine: your kids freaking out, unsure about their future because they don't understand what's happening to their dad. Happened to Kip. Imagine: your wife not knowing how to take care of your physical needs and unsure of what the future holds. Happened to Kip.
And yet, Kip is unique. He is beyond upbeat. "Keep It Positive" -- an acronym for Kip -- is his attitude. Never down, always up. Looking to the future, not to the past.
And you can help this positivity flow. Our goal is $60,000 -- that'll fund one year of Kip's assisted living. He NEEDS this.
Please help. Literally, every single dollar makes a difference. Your contribution, no matter how small, goes to making this family have one less horrifyingly scary night wondering how bills get paid.
Thank you from the bottom of our hearts. Our goal for Kip is $60,000. Please watch the video for his own message to you.
Watch Kip’s 2019 ALS awareness video (2:00)
Finding out you have ALS
One day I was playing tennis and discovered I couldn’t jump at the net…something so routine. That was the first clue something was wrong.
Over the next several weeks my foot stopped working, I developed drop foot. That was worrying, but I still didn’t know the extent of what was wrong.
I next visited with a sports orthopedic surgeon, where they gave me an epidural, thinking that might help alleviate the symptoms. But there was no improvement. That doctor was the first one to notice that my muscles were twitching — an ominous sign — and he recommended I see a neurologist.
At the same time my primary doctor was focusing on rheumatology as a cause, thinking these issues might involve a muscle disease. But after many tests, the biopsy came back negative and that’s when we knew it was likely a more serious condition.
My neurologist didn’t diagnose me with ALS, but I remember one of his technicians telling me they were concerned about it based on my test results. They referred me to Dr. Jonathan Glass at the Emory brain health center and head of the Emory ALS Clinic.
After about six or eight minutes sitting across from him in his office, he told me his diagnosis. On June 27, 2017, about a year after the first symptoms appeared, I had the conversation I’ll never forget:
Doc: “Have you heard of Lou Gehrig’s Disease?”
Me: “Yes”
Doc: “That’s what you’ve got”
Me: “…OK”
Reaction to ALS
My immediate reaction, of course, was shock and I quietly began prioritizing my questions for him. I wasn’t surprised because I had been doing a lot of research on the web, but it was still shocking to hear those words.
After discussing it with Dr. Glass, it was clear I was somewhat fortunate — if you can call it that — to have slowly developing symptoms compared to many with ALS, and that I needed to make a plan to move forward as best I could.
Without ignoring reality, it was back to work and business more-or-less as usual day-by-day as my body would let me.
Development of KIP
It took about a year until I began embracing advocacy for those with ALS and the focus on a cure. I decided to start a team to raise awareness and raise money for the 2018 Walk to Defeat ALS.
The team name I chose was “Keep It Positive,” a play on my name, Kip I didn’t realize how that phrase would inject enthusiasm into the community and help me power through the next year. I had a logo created and T-shirts made.
A couple of months later at the ALS Association walk I’ve met people who said, “Kip — oh I know you! Keep It Positive!” Every day it helps me be energized.
Now, I have people sending me pictures from all around the world wearing their Keep It Positive T-shirts!
My outlook is, “I will not accept my outcome tomorrow based on yesterday. Yesterday is based on history, which is trends and tendencies. I’m not a trend or a tendency, I’m an individual case – and so are you. Look forward to tomorrow, live today, and Keep it Positive. “
My career
I was on the radio. I started in the industry as an on-air DJ, programming radio stations around the country and then I transitioned into a product strategist in the technology industry, specializing in media and marketing platforms and solutions. I love researching, synthesizing information and telling stories, which is coming in awfully handy now that I am an ALS advocate.
Progression of ALS
As I got into my second year following the diagnosis, I began having problems with mobility and my hand functions, particularly typing.
Ultimately it was those mobility issues that forced me to stop working. Each day, the idea of getting dressed and getting into the office was exhausting. It just became too much.
These last few months have really taken a toll on my body.
I use a walker all the time around the house and a power wheelchair to go outside. But my biggest frustration is the weakness in my arms. It limits my independence tremendously — I can’t dress myself or prepare food for myself, and recently, I had to stop driving.
Because of that, every day that goes by I am in need of more and more assistance. My focus has to be my individual safety, rest, and nutrition, or as I have come to know it, “safe, rest, eat.”
My metabolism has always been pretty high, but I’ve learned that ALS doubles it. So, to maintain my weight, I attempt to eat 4000 calories a day. And that is tough when I can’t prepare my own meals. I’ve come to know the taste of Boost milkshakes.
I don’t have anybody in the role of my individual caretaker, so I need to find a way to fill that void, and I need to lessen the responsibility and pressure that’s being put on my three kids.
My preference is to move into an assisted living arrangement so I have a access to a team to help me meet those “safe, rest, eat” goals…and also let my children be children.
My kids
Having three children ages 12 and under complicates things. In the past year, they have each gone through their own cycles of grief.
Meredith, who is 12, went through a phase where she was worried about leaving me at home by myself as my ALS progressed. She was so worried because I had hurt myself falling down a few times.
Lexi, 11, who is scared, of course, has started learning about and understanding ALS.
And Brody, who is 8, has struggled mightily. He is a little too young to understand how to explain his emotions or make sense of what’s happening to his dad. We love him and are very concerned about him.
Collectively they are scared, confused and worried. But we try to maintain as much humor in our lives as possible.
My wife Michelle
Michelle is a part-time teacher and has her hands full taking care of our three children.
She is focused on our well-being and works like crazy to bring in extra money whenever she can.
It’s overwhelming sometimes for her and for the rest of us. Young kids take energy, caring, and attention, and she is working hard to make that part of our lives work. But ALS is a 24/7 disease, and together we’re focusing on how to address it and plan for the future.
I never envisioned setting up a GoFundMe page. Probably few of us do. But it’s the only way forward for many of us with ALS. One lesson I’ve learned is that you have to be willing to take help from others gracefully and gratefully…and pay it forward as best we can.
I’m asking for your help. Please click the link to donate. It means more to my family and me than you’ll ever know.
Kip’s speech at the 2018 ALS Association Walk to Defeat ALS
Learn more about Kip at his website
https://kip-keepitpositive.com/
Organizer
Kip Heinzmann
Organizer
Atlanta, GA
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