Jack's Corner Foundation

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Southport, CT
Jack's Corner Foundation

We are dedicated to improving the quality of life and finding a cure for the ultra-rare disease SPG50

10/17/2025

We are thrilled, humbled and grateful to announce that we have reached the $1.15M goal! This is an astonishing accomplishment, made possible by parents who refused to back down from what seemed to be an impossible goal.

Families sacrificed everything to dedicate themselves to fundraising, stopping at nothing to give their children the chance for potentially life-altering treatment. Communities joined together, believing in those children and joining the fight to give them the chance they deserve.

We have two exciting announcements to share alongside this incredible achievement! First, a child has been selected to receive treatment! Sweet Naomi of will be treated in December and we are truly overjoyed for her and her family.

Second, another dose has been secured so that a 5th child will be able to receive treatment! We will need to raise an additional $230,000 to cover the related hospital expenses, but that pales in comparison to the opportunity to give another child this potentially life-changing treatment! We have already raised $95k of this amount and we have faith that, together, we will be able to raise the rest!

Thank you from the bottom of our hearts for your continued dedication to helping children with SPG50. None of this would be possible without you and we are eternally grateful for your support.

09/12/2025

We are happy to announce that $228k has been raised towards the $1.15M needed to start the Phase 3 SPG50 gene therapy clinical trial! Multiple families have come together in this fundraising effort, working tirelessly to give 4 children with SPG50 potentially life changing treatment.

There are many ways you can help! Donate through the link in our bio, share our story on social media or with friends in your community, or host your own fundraiser!

Thank you for believing in our children and joining with us to help give them a better future!

09/05/2025

Gene Therapy Clinical Trial Update! There has been much in the works behind the scenes over the last several months and we finally have an update to share on the Phase III SPG50 gene therapy clinical trial.

Through the amazing efforts of several families and such strong support from our JCF community, enough money has been raised to fund the cost of (4) doses of Melpida, the gene therapy treatment for SPG50.

UT Southwestern has agreed to take on treating (4) children as soon as possible, but unfortunately there are hospital and trial start up costs that need to be paid before that can happen. In order for the trial to start and (4) children to receive potentially life-changing treatment, we need to raise an additional $1.15M.

This amount of money is astounding, on top of the millions upon millions that Terry Pirovolakis raised to research, develop and manufacture the drug, the millions more that have been raised to treat children in Phase I/2 in the U.S., and the millions that were raised to pay for manufacturing more doses.

Unfortunately, this is the reality of trying to treat an ultra-rare disease with ~100 cases in the world. Pharmaceutical companies are not interested. Private equity companies aren’t interested. There are “too few children” who need the treatment.

So it falls to parents. To nonprofits. To communities. To rally together and show these children that they aren’t “too few.” They are MORE than enough. They have faces, names, personalities. They are strong, brave and have so much heart. They deserve a chance at a treatment that could change their lives and we will not stop fighting until they get it.

08/27/2025

Our hearts break every time we talk to the parents of a child newly diagnosed with SPG50. The devastation and fear are palpable and we know firsthand that nothing we say can help ease the pain that courses through them.

The one thing we can offer is to amplify their voice, through The Jack’s Corner Foundation Network.

Today the Jack’s Corner Foundation Network is growing as we introduce Mila’s Corner. Visit milascorner.org to learn more about sweet Mila’s story and stay tuned for more updates to come soon!

02/28/2025

Today is Rare Disease Day, a day that has been observed for 17 years and been a part of our personal lives for less than 3.

It is a day to raise awareness, educate, advocate, increase empathy, promote research and drive legislation for policy changes.

It is a day to come together, not just as a rare community, but as humans who believe in each other.

As important as today is, it is equally important what we do tomorrow. And the next day. And the day after that. Because when we stand together, fight together, hope together, we have a real chance to change the lives of the 300 million people in the world living with a rare disease.

02/25/2025

We are excited to announce that Jack’s Corner is part of ‘s Give Back Program! From now until April 15th, you can shop with 20% off using code GB20JC25 and Petite Plume will donate 20% of every purchase back to Jack’s Corner!

Petite Plume makes classic, adorable pajamas for children and adults, with special prints for holidays and great basics for every day wear. This is the perfect time to grab an Easter basket filler or do a spring PJ refresh!

02/24/2025

We are excited to announce that $1.88 million has been raised towards the Phase 3 SPG50 gene therapy clinical trial! This is truly an amazing accomplishment that would not be possible without the tireless work of families, friends and communities around the world who have joined together to help children with SPG50.

We still need to raise another $1.12 million to give 8 children with SPG50 a potentially life altering treatment. We know how hard this will be, but we watch our children do hard things every single day. They inspire us. They give us hope. We will never stop fighting for them.

There are many ways you can help! Donate through the link in our bio, share our story on social media or with friends in your community, or host your own fundraiser (bake sales are easy, yummy and always a hit)!

Thank you for believing in our children and joining with us to help give them a better future!

02/23/2025

Ultra rare disease, SPG50 in particular, is a cruel thief. It steals the life your child deserves. It steals skills they worked so desperately hard for and ones they will never get. It replaces a childhood filled with playgrounds and bike rides with one filled with hospitals and medical procedures. It robs them their innocence… and you of yours.

We fight back as hard as we can with science and medicine, but one of the best ways we do it is through JOY. Jack is pure joy and we lean into the things that bring out his sweet, twinkly smile. For over half his little life, and have been at the top of that list. Their music is not only the soundtrack of our lives, but Jack at some point decided they are either part of our family or his imaginary/real friends. This means we talk to them daily, they help us through hard things, and they are a surefire way for us to choose joy.

Last night we saw them play and put a huge, special deposit in the . Jack’s brain basically exploded seeing them in person, these heroes who have become such a big part of his life. took it one step further by waving at him and then saying “Hey, Buddy!” and squeezing his arm when she walked by 😭

Last night was, to quote the Holcomb’s song, putting money in the Memory Bank 🤍💫

“Take the ones you love
Make the memories run
Like a river in the sun
Let ‘em shine, make ‘em fine
Because we only got so much time

Gonna chase the sun, make a little fun
While we’re willing and able
Got to shoot your shot, give it all you got
Laying all our cards on the table
Got to carpe the diem
Road trip, museum
Burn up all the gas in the tank
Put your money, money, money in the memory bank
Put your money, money in the memory bank”
- Memory Bank by Drew & Ellie Holcomb

02/15/2025

Today marks 2 years since Jack received gene therapy to treat SPG50 at . In some ways, it feels as though it was just yesterday that we were checking into the hospital, more terrified than we’ve ever been. In other ways it feels like that happened in a different lifetime.

Everyone always wants to know, how is Jack? Cognitively, he is thriving. His little mind amazes us daily, with complex thoughts, nonstop questions and (very specific) opinions. He talks in long sentences, negotiates with impressive strategy, and has a will of iron. He is in first grade and is learning to read. Watching the pride in his face as he sounds out words and sentences is a joy like no other.

Jack received treatment at 5.5 years old when spasticity had already begun. Unfortunately, his spasticity is worsening and this is causing his ability to walk to decline. We are devastated, but we are not giving up hope. We know that if we continue to pursue research and the development of new medicines, science will lead us to additional ways to keep fighting this horrible disease.

What does all of this mean? It means that the gene therapy is working. Our baby’s mind, which is what we wanted to protect most all along, is developing and advancing daily. That alone is a miracle and we are beyond thankful. It also means that treating children at younger ages, before spasticity and disease progression begins, is where the most hope lies.

We are more committed than ever to fighting for all children with SPG50, including our sweet Jack. These children deserve every chance in the world and it is up to us to make sure they get them.

02/11/2025

It was truly an honor to appear on to meet Terry Pirovolakis in person for the first time.

There are no words big enough to thank the person who saved your baby’s life. I will never be able to do it properly. Terry is the reason we have hope and the reason our sweet Jack has a chance. I fumbled trying to thank him through tears on the show and was not as eloquent as he deserves, but I am so grateful to the for giving me the opportunity to honor him and tell him what he means to us.

Terry will always be our hero and Jack’s guardian angel. We will fight for our children alongside him for the rest of our lives.

02/10/2025

So excited to be part of the tomorrow! Tune in!

Find out when/where to watch in your area here: www.kellyclarksonshow.com/wheretowatch

Address

105 Half Mile Lane
Southport, CT
06890

Telephone

+13163052169

Website

http://www.jackscorner.org/, https://linktr.ee/jackscornerfoundation

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