Loving Loic

Because some rare diseases have similar patterns, or manifest in similar ways, research or treatment for one can have implications for others. This is how the world of rare diseases become more common than previously imagined.

Full interview with Deborah Requesens from the Orphan Disease Center at Penn Medicine is available on the Loving Loic YouTube channel.

“Foundations are the main funder for rare disease research.” When a rare disease gets diagnosed, or needs work done to find a treatment or therapy, more often than not it is the small foundations who provide the funding. From Golf Tournaments to 5K Walks, the money raised at the foundation level is what funds the research that gets picked up by medical institutions. When we say “every dollar counts” we mean it! Our 3rd Annual Golf Tournament is coming up this Saturday June 27th, link to register/sponsor on our website!

Full interview with Deborah Requesens from the Orphan Disease Center at Penn Medicine is available on our YouTube channel.

One Week Ago our supporters helped us raise almost $15,000 towards our goal to fund the PKAN Gene Therapy. More importantly, supporters of all rare disease patients gathered in Philadelphia to prove how strong the rare disease community is when we work together. As far as it’s known by the Orphan Disease Center, the Million Dollar Bike Ride is the only event in the world that gathers/invites all rare diseases together to raise awareness and funds towards research. This year we had one rider, and hopefully next year we will have many more.

Full interview with Deborah Requesens from the Orphan Disease Center at Penn Medicine is available on the Loving Loic YouTube channel.

⛳️ There’s still time to join us at the Loving Loic Foundation Golf Classic!

We have just a couple of team spots remaining for next Saturday’s tournament, and we’d love to have you on the course with us. Whether you’re playing to support a great cause, enjoy a day of golf, or both, this is a fun event you won’t want to miss.

Every registration helps us continue funding groundbreaking research to bring a gene therapy treatment to children living with PKAN, including our son, Loic.

Register your team today before the remaining spots are gone:

🔗 Link in bio or visit https://www.lovingloic.org/3rd-annual-golf-classic

Thank you to all of our players, sponsors, and supporters for helping us drive hope forward. Special thank you to our Eagle and Birdie sponsors: Cotner Ryan Blackford, First Interstate Bank, Schulte Law Firm, Ponderosa Dental and Holloway & Hulling!

We can’t wait to see you on the course!

Orphan diseases are classified in the United States as affecting fewer than 200,000 individuals. Our discussion with Deborah Requesens of the Orphan Disease taught us that there are over 7,000 rare diseases in existence, affecting 1 in 10 Americans. So while an individual disease might not be common, the impact more people than we might have previously believed.

Full interview with Deborah Requesens from the Orphan Disease Center at Penn Medicine is available on the Loving Loic YouTube channel.

On Saturday June 13th, Loving Loic will have a rider at the Million Dollar Bike ride in Philadelphia, as we raise money to cure PKAN. Thankfully, we have $6,200 worth of matching donations towards this event!

By raising $6,200 between now and June 13th, Loving Loic earns $12,400. The donation link is in this video and in our bio, every dollar can help save a life!

PKAN is a rare, genetic, terminal disease that has been fatal for over 70 years since it was first discovered, and we are 2 Million Dollars away from funding the PKAN Gene Therapy, which will put an end to this cruel disease.

May 23, 2023 was the day we heard the words that changed our lives forever: Loic has PKAN.

Three years later, it’s hard to even put into words everything that has happened since that moment.

We started the Loving Loic Foundation. Together, we’ve raised over $2 million toward research and a potential treatment. We’ve hosted galas and golf tournaments. We’ve met incredible people—friends, strangers, families, doctors, supporters—who stepped into this fight beside us and never left.

At the same time, we’ve watched Loic lose so many of the abilities he once had. We have watched PKAN take pieces of him little by little. He’s undergone a DBS surgery. We’ve spent endless hours traveling, fundraising, advocating, researching, and trying to outrun a disease that never slows down.

The hardest part is that we still do not have a treatment or a cure yet.

If you would have asked me three years ago where we would be today, I would have told you Loic would already be cured. I truly believed we would move faster than this. Some days I wish time would slow down. Other days I wish research would speed up.

But we are still here and we are not stopping.

One thing that has come from all of this is a community that has carried us in ways I will never be able to fully explain. I constantly feel guilty that I cannot personally thank every single person the way they deserve. There are always so many moving pieces, so many balls in the air, and so much happening behind the scenes.

But please know this: we see you. We appreciate you. And we would not still be standing without all of you.

Whether you are family, close friends, people we’ve met along the way, or complete strangers who chose to care about our son—thank you for walking this road with us.

We still have a long way to go. But we’re going to keep fighting for Loic, for every PKAN child, and for the cure they deserve.