Andy Lipman's Blog, page 10

9 Ways to know if someone is on Trikafta

With Trikafta, the miracle CF drug, now available to som many individuals with cystic fibrosis in the US. I’ve noticed some distinct commonalities with people who are on the drug. None of these are actual symptoms or side effects of the drug itself according to Vertex’s website. For those of you on Trikafta or know someone who is on Trikafta, do these situations seem familiar?

9 Ways to know someone may be on Trikafta:




After just five minutes of taking their first two orange tablets, guys are running into phone booths trying to don a red cape and blue tights and women are looking for their gold lassos of truth and an invisible jet (DC Comics humor, folks).

2. CF clinic respiratory therapists are asking these people “What do you mean you can’t get sputum up for me for a culture?”

3. A person who is likely on Trikafta walks into the gym after a few days and in their best Arnold Schwarzenegger impersonation declares “I’m back!”

4. When someone posts on social media that they got a great Christmas or Hanukkah present, it’s likely that it’s not a new puppy or a car. It’s probably a square box with Trikafta on the label.

5. After a week of taking orange and blue pills and checking their scales, a person’s internet search history may for the first time include the terms Weight Watchers and/or Jenny Craig.

6. The individual mentions “The Purge” hundreds of times without knowing of or seeing the movie or TV show with the exact same name.

7. A CF warrior is actually looking forward to taking a PFT (pulmonary function test) rather than being petrified of it.

8. Pictures on their phones are less of their family or pets and more of different angles of the box with Trikafta on the label to see the best picture to use in a social media post.

9. A person has the amazing ability to include the changes in his/her sputum colors and bowel movements in any dinner conversation. A true gift unless you’re on the receiving end of said conversation.

Trikafta is a gift, folks, but so is a sense of humor. I have learned that if you can’t make fun of even the most serious of situations, you’ll never be able to survive this thing called life. Hopefully, you enjoyed this lighter post regarding cystic fibrosis.

Live your dreams and love your life and I just noticed my sputum color and my bowel movements…oh never mind!

Andy

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The Importance of Hope – life with cystic fibrosis

Spreading hope to others with cystic fibrosis is so important to me and why I started the CF Warrior Project.

Growing up with cystic fibrosis, a childhood disease with a median life expectancy in the twenties, I didn’t see or feel a lot of hope. I cried a lot and lived in fear of my future or lack thereof. It took me years to find hope and I did it through hard work and telling stories about those who were able to find hope despite dire circumstances.

Watching the news every night, I’m inundated with tons of stories of why our world is so doomed. Some of the stories are so dreadful it makes it tough to watch. Then there are statistics like my pulmonary function numbers. I feel these statistics are trying to measure me and predict how long I am going to live. Why can’t we just stay positive and live one day at a time? What if we all thought that way? Could we turn this world around? I believe so. The reason I write what I write is because I want to offer something people with cystic fibrosis weren’t offered for decades: Hope!

My goal is to show the world there is something positive about cystic fibrosis besides the sweat test first diagnosing us with it. I want to live in a world where we turn on the television set and there’s a story about someone who defied the odds and is kicking ass. I want to see someone making a difference for others. It does happen. Those stories, though, are rarely shown because they don’t sell.

My goal with The CF Warrior Project is evoking hope by telling stories of those who are living their lives and defying the odds. Sixty-five amazing stories this time around and another batch of stories for the next book are currently being amassed. Let’s live in a world where hope prevails.

Live your dreams and love your life.

Andy

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To Wendy on her 49th birthday.

Dear Wendy, 

Today we would have celebrated your 49th birthday. That’s crazy, right? I wanted to tell you about my year as I do every year on your birthday, and let you know regarding progress against cystic fibrosis. First off, we had another successful Wish for Wendy. Rain once again was expected all day but for the most part it held off. I know who I can thank for that. We grossed about $370,000 and our cumulative total surpassed $4.5 million for the Cystic Fibrosis Foundation. We are looking at expanding Wish for Wendy and making it something even bigger but I’m still trying to figure things out. I just wanted you to know your legacy will be kept intact. I know I owe you my life and I will make sure to return the favor every day by never taking a moment for granted. 

Some of the goals I have for CF advocacy are to continue pushing for other countries to have the same access to life-saving drugs we in the United States are fortunate to have. I also want to keep on writing books to inspire people. The CF Warrior Project was very successful and is something I will make more than a book. I want it to be a movement. I want it to bring hope to those who so desperately need it.

On another note, we have lost some good people this year to the disease as we always do. Sadly, there are too many to mention. Please look out for them.

As far as how I’m doing, things are really good. I have been traveling a little bit to spread the word about The CF Warrior Project. We did The Today Show this year. I was really nervous only because I wasn’t there for just me. If it was just me, I could be a total cut-up and not worry about it but I’m doing my best to advocate for others with this disease. I think it went pretty well. The crazy thing is the same day I was on the show, a new drug called Trikafta was FDA approved and this is the first one that I can actually take. In fact, 90% of the CF population is eligible. Unfortunately, that means we need to find something for the other 10% but at least we are making progress and science is definitely amazing!

I started the drug on Sunday, November 24, and while it took a few days to notice any changes, I’m now reaping the rewards for 46 years of staying compliant and working hard in my fight against CF. My lung function was up five points after just two weeks, which is crazy to me. My mucus is clear. I can take a deep breath. Food tastes differently. Things smell differently. I feel like I’m in a different body.

None of our Atlanta sports teams won a championship again this year though I will mention that Ethan’s baseball team got all the way to the championship game before my coaching caught up to the team. Ha! Ha! By the way, he’s doing well. It’s crazy that he had a stroke when he was born but despite that, he is excelling. Remember his Hebrew name is after you. He is now playing travel baseball and basketball. He’s a very good tennis player, too. He’s improving in school and working really hard. We are so proud of him. Can you believe he’s already 11??? 

And then there’s Avery. Her softball career may have come to an end. She played all three years for her middle school and played more than a half dozen seasons of recreational ball. She is now 13 and a beautiful young lady. She is still kicking ass fighting her nut allergies. She has become so brave with all of the things she has to deal with. Still, she’s a teenager so she’s definitely letting me know things unfiltered. Ha! ha! She had her bat mitzvah in March and did a terrific job. She knocked it out of the park. I can’t show her my bar mitzvah video now because she’ll know she did so much better than me. Let me add that she doesn’t even want to see it because she says it will be boring. Whatever! She is performing really well in school and will be in high school next year, if you can believe it. 

Andrea is doing great. She is now doing exceptional board work for Jewish Home Life and the Bremen home. She’s also an amazing tennis player and as you know like you and me, she is an absolute warrior. I’m so proud of her. We lost her mom Roberta this year. It was on Avery’s birthday and a month before her bat mitzvah. It was very difficult. Andrea has remained so strong throughout but I know it has to be so hard for her. Her mom was a great person and was so selfless. Her heart was her biggest asset and we think of her every day.

Emily is doing well. She is doing a lot of philanthropy now. She did a ton for Wish for Wendy, too. She is back living in Atlanta and she has really connected with Avery, which is great. Avery needs a cool family member, other than her mom of course. I’m the opposite of cool. Would that be lukewarm? Who knows? 

Mom and Dad are great. They celebrated their 50th anniversary this year!!! Emily threw them an amazing party. Dad continues working to help find a cure for cystic fibrosis and Mom continues to do a ton of work for our charity. They are both two of the most philanthropic people I know.

Well, I don’t want to keep you so happy 49th birthday. How are we going to celebrate number 50 next year? I know I haven’t seen you in my dreams for many years but if you have a chance, drop me a hint of how we can really celebrate this one and at the same time make a difference for others. Also, if you could let me know what to get the kids and Andrea for Hanukkah, I would greatly appreciate it. As far as what I want for Hanukkah, a cure for cystic fibrosis would be nice. But if you can’t pull that off, just one sports championship for my Braves, Falcons, Hawks or Bulldogs. Please! If you can’t do it for me, do it for Ethan. I don’t want him to blame me for giving him the worst sports teams on this planet.

Anyway, I love you so much! Thanks as always for showing me the way.

Love,
Your Little Bro, Andy

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First Month on Trikafta

The FDA approved Trikafta, the CFTR modulator, on Monday, October 21, 2019. Coincidentally I found myself on The Today Show that day discussing what a drug like this could do once it’s approved. A few hours later – boom! I’m officially on the clock waiting for the “magic drug” that could save my life. 

This drug will affect 90% of the cystic fibrosis population who have two things in common: they are at least 12 years old and have at least one copy of the Delta F508 gene. This is the fourth breakthrough CFTR modulator FDA has approved and the first one I can take. To say I was excited would be an understatement.

Before starting Trikafta, I had several fears. For one, what if my lung function doesn’t improve? I was skeptical to begin with as I’d never been on a CFTR modulator and therefore I wasn’t sure my 46-year-old body would take to it. This was a big deal. If it didn’t work, would anything really? Would I be letting everyone down? Would I be having to deal with my own depression? 

Another concern was what if the side effects are too much and I have to come off the drug. I’ve dealt with CF issues before but I never “knew” they were coming. It’s a little scary knowing you are going to have the flu (one of the side effects) before you even get it. 

And lastly, what if my improvement is great but my liver testing goes badly and therefore I have to go off the drug? Imagine feeling amazing for the first time in your life but a few weeks later a doctor tells you, “I’m glad you liked feeling great but the drug is damaging your body so you’ll have to come off and go back to being, well, you.” It’s like Cinderella at midnight turning back into a normal girl. I really need this glass slipper to fit.

I began taking Trikafta on Sunday, November 24, 34 long days after the drug was finally FDA approved. Dealing with insurance and my mail-order pharmacy was a nightmare but thanks to the Compass program at the CF Foundation and Vertex GPS, eventually the drug was delivered. My anticipation was great as I had fellow CF warriors tell me they felt a difference pretty quickly, including one person who noticed as early as half an hour on the drug that he could breathe deeper. Needless to say, when I was feeling very little difference the first couple of days, I became concerned that the drug wasn’t working and honestly became skeptical about everyone’s “improvement.” It didn’t help that I deal with clinical anxiety either. Then the results began coming back. My friends were having 5, 10, 15 and even 20% improvement on their pulmonary function tests after only a week or two. It was amazing.

As concerned as I was with the side effects, I wanted to have some so I knew the drug was effective. Peers had talked about the purge the first week where you develop flu-like symptoms and start coughing to the point of throwing up for a day or two. I didn’t feel anything like that until …

On the night of day three I began coughing. Those of us with CF know what our coughs feel and sound like but this one was different. This one had lots more mucus that slowly became watered down. The cough was like throwing up as each time I coughed, I felt like I needed to cough again. For years I tried to stop my cough because it made me feel sick and look different but I could tell that the watered-down cough was slowly helping so I spent night four in my basement, coughing until my normal green and yellow mucus began turning white and soon clear. Eventually, it went from gobs of sputum to what looked like rain. It appears THIS was my version of the purge. I coughed like this at night for the next two or three nights. 

Other side effects began soon after. I’d had a stomachache the first day, but not one I was concerned with until the issues with the cough subsided. That’s when one day I decided to go running while waiting on my car, which was in the shop. All of a sudden it felt like someone pointed a blow dryer on my rear end and things became very warm and began flowing out of control. I ran into the grocery store and fortunately, there was a handicapped stall where I was able to do my business. It was scary though. It was like a volcano and lasted for 15 minutes, and the cleanup was longer. It was embarrassing but I knew, just like the excessive nocturnal coughing, this was a side effect and meant the drug was kicking my body’s ass (literally this time) like it was supposed to.

A few days later, after being asked by everyone and their mother if I noticed a difference since starting the drug, I did. The changes were subtle but they were there. I was able to take a deep breath. For the first time in my life, actually, I was able to breathe all the way in and not feel congestion. I used to be afraid to laugh (though I love to tell jokes) because I feared another coughing jag. Not anymore. When I do my daily nasal sprays, I can actually feel the spray hitting my sinuses instead of sticking in my nose. Foods taste different. Fortunately, I still liked sushi. I gained about seven pounds, which is common on the drug. I have started eating like a normal person instead of eating everything within reach, as I’d been told to do since I was a youngster to avoid losing too much weight.

My energy is different. I still run two to three miles a day like normal but instead of clearing my throat maybe 30 to 40 times and coughing 10 to 12 times, I’m doing the former two to three times and the latter one to two times max. Instead of having a coughing spasm after my workouts, at most I cough maybe once and it doesn’t sound deep at all. And my mucus went from green and yellow to mostly clear with a little tint of yellow. Instead of sweating so much that I look like I emerged from a tidal wave, I look more like a guy who just walked out of his house after a nice nap. All of these subtle changes have led to amazing improvements but I had to know the big one: Was my lung function better?

Two weeks after taking the drug, I convinced myself to do a portable PFT at home. I told myself originally I would wait 30 days but the improvements that I was feeling were too great. I had to know. Two months earlier I had blown an FEV1 of 84% which was great for me and around my baseline. FEV1 is the forced air that you breathe out in the first second and the number one stat that doctors look at to determine lung function improvement or decline. That day I didn’t blow an 84, nor did I blow an 85, an 86, an 87 or an 88. I blew 89%. The best I’d done in maybe 10 years. I couldn’t believe it! 

I don’t feel like the same person anymore. Yes, I can tell I still have CF and I still do all my treatments and take all my meds, but I just feel that for the first time in my life I’m not terrified of waking up the next morning feeling worse. I’m not as scared to do a PFT and trust me I’m usually petrified. I work out with my trainer now and he says he can tell I have extra energy. I’m not coughing as much when I go out and when I do, hardly anything comes out. Things smell differently and though I’m usually very even keeled, I am now so excited about the way I’m feeling. 

I’m so excited to be on Trikafta and I’m so grateful for those who have worked so hard to make it a reality. Still there’s a part of me that feels a bit of guilt for talking about it. For one, I’ve lost so many friends to CF who cannot be here to feel these gains. And secondly, there is still ten percent of the population that can’t use this drug because it’s not a match for their genotype, or there is limited access to it in their country, or they have had transplants already, or they are too young to qualify (under 12). Everyone needs a drug like this and the only way I can avoid feeling guilty is that I make sure to advocate for the other ten percent. I’ve been there. When Kalydeco came out seven years ago, I was not a candidate. Soon after came Orkambi and Symdeko and again I was not a candidate. We need breakthrough CFTR modulators for everyone and now that I’ve seen what they can do, I’m going to sound greedy—we need a cure for cystic fibrosis.

I won’t stop fighting until that happens because although I can breathe easier now, I will breathe even easier once we all have our “magic drug.”

Live your dreams and love your life.

Best Wishes,

Andy

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Only 7 Like Me- A CF Warrior Story

My name is William. I’m 27 years old and from the Garden State, New Jersey. When I was born, the doctor’s realized something was wrong with my colon so, I went under the scope after being born 15 hours before for a surgery known as Meconium Ileus, which is when a baby has a small left side of the colon. I would spend the next three months in the hospital, undergoing numerous tests, until it was realized that I had cystic fibrosis after a sweat test when I was three months old. Almost all babies, according to Seattle’s Children Hospital, who undergo the surgery have CF and 1 in 5 CF patients have undergone the surgery.

While I’ve been relatively healthy for a person with CF, I’ve had my struggles, such as this year when my gallbladder and appendix went septic. I’m definitely one of the lucky ones.

What’s important to understand is, not everyone is like me. I’m an outlier. There are only seven other people in the world who have CF have my genetic mutation, which itself is a crazy statistic. There are children and adults, (but let’s focus on the kids for a second) who aren’t as lucky. They’ve spent their lives in and out of the hospital, hooked up to IV’s and oxygen tanks, and barely able to gain weight. They’re lucky if they’re able to see 10-15 years old. Often, those families can be burdened with hospital bills that are way too high for anyone to pay. While the CF Foundation has made tremendous strides increasing the life expectancy for people with CF that have benefited adults like Andy and myself, there are still families who suffer.

No parent should have to suffer and I can speak for any adult or caretaker when I say that no one should ever have to live with cystic fibrosis. We’ve made excellent strides in my lifetime with medicine and research, but we need to push further in eradicating this terrible disease from existence. We have to make sure that parents can take care of their children and adults with CF don’t live in poverty, giving all of their money to medical costs.

In my spare time, I like to read, play pick up basketball, and do stand up comedy.

Please help us raise money for Cystic Fibrosis until CF stands for Cure Found by donating today!

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You Will Not Believe my PFT Results!

On Friday I went ahead and did my pulmonary function test (PFT). I was hoping to get a few percentage points higher and get excited about the weekend. But unfortunately with pulmonary function tests, you never know how they are going to go.  As most of you know this is a big deal as I have been taking Trikafta for a few weeks now. To say I was nervous is an understatement!

When doing a PFT, the big number to look at is FEV1 which is the Forced Expiratory Volume in the first second (how much you blow out in the first second). It’s the volume of air that can be forced out in one second after taking a deep breath, an important measure of pulmonary function. 

The second most important part of the PFT at least most times is forced vital capacity (FVC). This is a measurement of lung size (in liters) and represents the volume of air in the lungs that can be exhaled following a deep inhalation. Obviously, I was hoping for an improvement in all of the above and had high hopes since I started taking Trikafta.

Here are my results:

10-3-19 Pre-Trikafta 

FVC 4.7 Liters 

FVC% 95%

FEV1 3.3 Liters

FEV1% 84%

Today – 13 days since starting Trikafta 

FVC 5.9 Liters

FVC% 118%

FEV1 3.5 Liters

FEV1% 89%

Best numbers in years!!!! So excited! I haven’t had this big of an increase in a long time. I’m beyond words!

Live your dreams and love your life!!!

Andy

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You will not belive my PFT Results!

On Friday I went ahead and did my pulmonary function test (PFT). I was hoping to get a few percentage points higher and get excited about the weekend. But unfortunately with pulmonary function tests, you never know how they are going to go.  As most of you know this is a big deal as I have been taking Trikafta for a few weeks now. To say I was nervous is an understatement!

When doing a PFT The big number to look at is FEV1 which is the Forced Expiratory Volume in the first second (how much you blow out in the first second). It’s the volume of air that can be forced out in one second after taking a deep breath, an important measure of pulmonary function. 

The second most important part of the PFT at least most times is forced vital capacity (FVC). This is a measurement of lung size (in liters) and represents the volume of air in the lungs that can be exhaled following a deep inhalation. Obviously, I was hoping for an improvement in all of the above and had high hopes since I started taking Trikafta.

Here are my results:

10-3-19 Pre-Trikafta 

FVC 4.7 Liters 

FVC% 95%

FEV1 3.3 Liters

FEV1% 84%

Today – 13 days since starting Trikafta 

FVC 5.9 Liters

FVC% 118%

FEV1 3.5 Liters

FEV1% 89%

Best numbers in years!!!! So excited! I haven’t had this big of an increase in a long time. I’m beyond words!

Live your dreams and love your life!!!

Andy

The post You will not belive my PFT Results! appeared first on CF Warrior Project.

My First Week on Trikafta

It has been 40 days since the words “Trikafta has been FDA approved.” This is a drug I’ve waited approximately 46 years and 2 months for. This drug is supposed to improve the way my chlorides come to the surface and therefore correct the salt and water content in my body specifically in my lungs. This is the first CFTR modulator that I have been able to take due to my genotype (Delta F508 and W1282X).

I think all the posts on Instagram and Facebook had me very impatient to start this drug. After a month of working with the insurance, my medical team, Vertex GPS and the Compass program at the CF Foundation, the box delivered while ironically enough I was in Los Angeles raising awareness. Sunday morning I began the adventure at my house with my wife, my biggest advocate and a warrior herself, standing by my side.

Day one the only thing I experienced was a bad stomach ache for several hours besides of course my trepidation and excitement. It’s difficult taking a drug and having person after person asking if you feel a difference yet. I felt like if I didn’t feel a difference that I was letting them down or I was doing something wrong. The stomach ache finally subsided but I didn’t see any other symptoms. Day two, I coughed a little bit at night but again I didn’t see much. Day three and day four is when the bad coughing really took place. Each lasted around an hour or so. One night was so bad that I stayed in my basement all night sitting up on the couch. I didn’t have headaches or a huge purge like everyone else but it definitely felt different. When I coughed, it was almost like throwing up. I knew there was more coming and I had to keep trying to get it up. Also, I noticed that the more I coughed, the wetter the coughs became.

Days five and six featured chills and some more coughing at night but still, there hasn’t been a “purge.” Here is what I’ve noticed though. Instead of coughing up dark yellow and green sputum like I normally do when I’m not on antibiotics, the sputum is either light yellow or clear which is great. I do feel like I can breathe a bit deeper. I’m not clearing my throat a lot when I run on the treadmill and I’m coughing a lot less. I also don’t have the coughing spasms I often have when I complete my run. Now if anything it’s a quick small cough with sputum that looks pretty normal. I haven’t felt the increase of energy that many people talk about but maybe that’s because my lung function wasn’t really low to begin with. Worst case I can always blame the kids for tiring me out. 

All I know is the changes have been subtle but subtle is better than nonexistent. I’m so happy to hear that others are seeing differences too. Everyone’s symptoms are different and the results are all across the board. I just hope that we find a drug for the other 10% of the CF population who deserves it just as much. I’m talking about post-transplant survivors, children under 12, people with different genotypes and those who can’t get access to drugs in their countries. And we all still need a cure! We have a long way to go…but we definitely are headed in the right direction.

Live your dreams and love your life.

Best Wishes,

Andy

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Giving Tuesday 2019 – Curing CF

Giving Tuesday marks the end of all the holiday shopping sales and post-thanksgiving cyber madness! This day offers non-profits and charities alike an opportunity to fundraise and spread their mission.

The CF Warrior Project is more than a book it is a movement of hope and fundraising that is all tied to the Wish For Wendy Foundation. Our mission is to give hope to those who need it and to find a CURE for cystic fibrosis.

So like most other non-profits and foundations on this Giving Tuesday we are taking some time to check in with our donors and stakeholders and to ask for your financial support.

We hope that you will take this time to donate to The Wish for Wendy Foundation. Since starting as a softball tournament in 2000, the Wish for Wendy Foundation has raised over $4.3 million for CF charities. Our goal is to continue to spread donations out to CF charities, making sure that we continue to fight for those with CF like we have over the first two decades of our inception.

Thank you for considering us.

You can donate by purchasing a book or visiting this link.

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Thankful for 2019

As Thanksgiving approached, I could not help but think of all the things I am thankful for in 2019. I wanted to share this gratitude with you all so we could celebrate some major achievements for the cystic fibrosis community and some of my personal gratitudes this year. You will notice that none of my sports teams are mentioned below. Hopefully in 2020, one of them can join this list.

February

Avery became a teenager. The crazy thing is growing up many in the CF community doubted someone born in the early 1970’s with cystic fibrosis could even live into their teens and here I am now having my own teenager. Now will I survive having a teenager? That’s another story altogether. 

March

Avery had her bat mitzvah in mid-March. We were so proud of her. She was the first of my grandmother’s great grandchildren to have a bat mitzvah. My grandmother Rose will turn 96 this year and survived the holocaust. Crazy to think she would have a great grandchild old enough to have a bat mitzvah. We also celebrated family members Stella and Aaron having their celebrations too. A month earlier was such a tough time with Avery’s grandmother/Andrea’s mom passing away. Roberta Valentine was an amazing person with an incredible heart. She and Avery had a special bond. We know that Avery did her proud. We miss her very much.From March to July, I was able to coach my children for possibly the last time. I assisted Avery’s Sun Devil team as Avery finished her 12 and under rec days at Sandy Springs Youth Sports and a few months later would finish her middle school career at Davis. I head coached Ethan’s baseball team and our Yankees made it all the way to the championship series. I also was an assistant coach on his summer travel ball team. It was an absolute blast. I realize as he gets older there is less of a chance I’ll be coaching him. I’m so proud of how much he’s improved.  

May

The CF Warrior Project: 65 Stories of Triumph against Cystic Fibrosis debuted. I am so proud of this book and the people who let me share their stories. Thank you to all the warriors who gave up their time to be part of this. This project went from a book to a Movement of hope for all the CF Warriors out there. I am excited to continue to raise hope and funds for CF through the project in 2020.

July

I ran my 23rd consecutive Peachtree Road Race. This 10K is something I am so proud of. It is not easy to have a lung disease and run too. I’ve made this race my annual statement to CF that I am not going down without a fight. I want to thank my Uncle Bobby for introducing me to it. We also celebrated Andrea’s birthday!!!

August

This August, the Lipman family grew as we rescued Lucky Lipman from the Atlanta Humane Society. Lucky has quickly adapted to being a Lipman. We love him so much. Ethan also celebrated his 11th birthday!

September

Andrea and I celebrated our 17th wedding anniversary. Hard to believe that this amazing woman is a part of my life. I always hear that behind every great man is a great woman. I disagree. I think that behind every great woman is a man learning to be a good man. Andrea is the strongest person in our household. She doesn’t talk much about her battle against multiple sclerosis (MS) and her victory over thyroid cancer but I can say that I learned how to be strong from her. I celebrated my 46th birthday. Though it’s not a meaningful birthday, anyone with a chronic disease knows that every birthday is so meaningful. I never thought I’d have grey hair and hear I am with a hair full of them.

October

I was invited to appear on the 3rd Hour of The Today Show! Never in my wildest dreams did I think I would appear on a national network. It was an honor to represent the CF Warrior Project and my family’s foundation Wish For Wendy. What I didn’t realize was that was the second biggest thing that would happen to me that day.







Trikafta was finally approved. That same day Trikafta was approved by the FDA. For the first time, I would be able to take a CFTR protein modulator. I’d waited all my life for this.Wish for Wendy celebrated its 20th year. Thank you so much to all of our supporters, my family, our committee, our donors, our volunteers, our umpires, our teams and our sponsors for making this event so successful. We have raised $4.3 million in 20 years. In one week, I’d been on The Today Show, learned about a new drug that could possibly extend my life and we celebrated our annual charity event in memory of my sister. Let’s just say it was a good week.

November

I was a featured author in the 28th annual Marcus Jewish Community Center Book Festival. It was an honor being able to present along with Brent and Kyle Pease who had a wonderful story to share.







I was able to visit Los Angeles and appear on the local ABC affiliate as well as run the Rose Bowl steps and even was one of the first finishers.On Saturday, November 24, 2019, I took my first dose of Trikafta. My life will never be the same. And for that and for the entire 2019, I am grateful.

These are just some of the amazing things that happened this year! I am so very grateful for these moments and the support that has been given to me and the CF Warrior project in 2019. together we can raise even more hope and come closer to a cure.

Live your dreams and love your life.

Andy

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