curing coats
Fundraiser

Make a donation here

This weekend we gathered, one last time, in our home. We brought this event back to where it all started and there we brought together our longest and strongest supporters of Curing Coats. The music was fabulous, Lost Ark was pouring drinks and the desserts were perfectly sweet.

We heard from Dr. Handa, Head of Retina at The Wilmer. Dr. Sodhi, Researcher for Curing Coats. Jack Pavlovcak, Founder Shots for Coats. Betsy Rutherford, Director of Development Wilmer. All had wonderful updates and sang their praises to all in attendance for their continued support of Dr. Sodhi's amazing work. However, one of the most exciting announcements was telling everyone where Curing Coats is headed.

I am not going anywhere. I will continue to consult with new patients, existing patients and be someone to walk families through their diagnosis. Our family will continue to support and run the Curing Coats website as well as social media sites as needed. And our family will continue fostering our relationships with everyone at The Wilmer Eye Institute at John Hopkins. Those things will never change. What is changing is who will be the face of Curing Coats and who will step into the role of party planner and fundraiser.

We met Madison & Dustyn DeBernardo 2 years ago when their son Charlie was diagnosed with Coats. We quickly formed a friendship, not only because of Charlie, but they live so close to us! Cue the dinners and phone calls and before you know it Dustyn is working with Kevin at Fidelity Investments, Madison is saying yes to my crazy idea and Charlie has gotten amazing care at Hopkins! When I called her up to make the "ask" she didn't even hesitate when she said YES to this idea of taking over the fundraiser.

So, we are not done. Our mission to support Dr. Sodhi through the completion of his discoveries is not done. Madison and Dustyn will help continue the fundraising and turn it into something I could only dream of. Look for announcements in 2026 for the next event and for now, please take a moment to donate to the 2025 fund. You can easily do that at www.curingcoatsfundraiser.com or with a direct link at https://aspire.hopkinsmedicine.org/project/45464

THANK YOU to all of you for your years of support, your continued support and to all our doctors who are making these promising drugs and treatments happen. And of course, THANK YOU to Madison and Dustyn....we can't wait to see what's next!

2024 WAS A SUCCESS!

SENDING OUT A HUGE THANK YOU TO ALL OF OUR DONORS AND BUSINESS OWNERS WHO MADE 2024 AMAZING. *WE ARE STILL TOTALING DONATIONS AND CAN’T WAIT TO MAKE THAT OFFICIAL ANNOUNCEMENT SOON!*
**WITHOUT THE FOOD TRUCKS, BAND, BREWERY, DISTILLERY, SHOTS FOR COATS, MD CORNHOLE ORGANIZATION AND FAMILY HELPING, THIS EVENT WOULD NOT HAVE BEEN POSSIBLE. THANK YOU!!**

Clarksville Neighbors edition featured The Smole Family and their work for The Wilmer Eye Institute. Click on each photo to read more details!

Our story

what is coats disease?

Coats disease is a very rare eye disease that causes the blood vessels in your eye to leak, causing retinal detachment, blindness and—in extreme cases—the loss of your eye.

Coats can be discovered when taking a photo and the resulting image includes one yellow eye and the other red. The yellow eye is the Coats Eye.

an example of what happens when taking a photo of someone with coats disease. the yellow eye is the coats eye.

Why we fundraise

Just after Christmas of 2013, our son, Sean, was diagnosed with Coats Disease. We were at his routine eye exam at Children's Hospital in Columbus, Ohio. Within moments of starting his exam, we knew something was terribly wrong. We were blessed, however, to be in a place where the doctors knew what they were looking at. Since Coats Disease is so rare, most eye doctors will never come across it in person.

We quickly went home to Maryland to seek out the best care possible for our son. Sean was seen on Monday, January 6, 2014 and was in surgery the next day.

Sean is being treated at The Wilmer Eye Institute at Johns Hopkins University and is getting great care. He has had seven surgeries since January 7, 2014. His eye is now stable and his eyesight has gone from 20/2000 at the time of diagnosis to 20/70! He is The Wilmer's "Miracle Case".

This is not the first time Coats Disease has effected our family. My cousin's son also has the disease. It is unheard of to have two children from the same family diagnosed with Coats. They have yet to identify a genetic link for the disease.

2025 Sean’s Progress Update: As of December 2024, Sean continues to see his team of doctors at The Wilmer every 8 months. His Coats Disease is steady but he has had a slight change in his vision. Nothing to worry about, just a change in prescription. The best part about this is that Sean came to us when he noticed a change in his vision. He verbalized that something was “off”. So, for all the parents out there worried their kids won’t advocate for themselves or pay attention to their vision changes as they get older, rest assured that they will!

2024 Research Update: Dr. Sodhi’s team of researchers are hard at work identifying proteins in the eye that we need to target for better treatment. Progress is being made and we are excited to share the release of a first manuscript in which they describe the use of a novel drug for the treatment of vascular permeability and retinal neovascularization. The research team has now moved onto animal testing, a HUGE step in research. If all goes well we could see the drug used in human trials in the next 2 years! Their goal is to generate the data necessary to justify to the FDA the use of this drug in children with Coats disease. Stay tuned and follow us online for all the latest updates!

click here to read about dr. Sodhi's current research

Throughout this journey our family has come to realize that we have to give back. We have to make this disease easier to handle for the next family... and that is how the Curing Coats Fundraiser was born.

about the fundraiser

Sean's team at The Johns Hopkins Wilmer Eye Institute includes retina specialist, Dr. Handa and ophthalmologist, Dr. Repka. They both work closely with Dr. Akrit Sodhi, who is responsible for researching a cure for Coats Disease. Before our family started the fundraiser, The Wilmer Eye Institute was not researching the disease.

We founded the fundraiser shortly after our son was diagnosed in 2014. In the ten years since the diagnosis of our cousin's son, treatment barely changed. We wanted to change that. Our hope is to make a difference for children with Coats Disease and assist a major eye institute as it works towards a cure.

Since 2014, we have hosted a large party at our home in Clarksville, Maryland and most recently at The Warehouse District in Columbia, MD. Through the generous donations of our community—food trucks, music, photography, supplies, raffle items, etc.—we have been able to donate 100% of all donations directly to The Wilmer Eye Institute and the research of Dr. Akrit Sodhi. All $275,000+ of it! This year, 2024, our event will be located at Hysteria Brewing Co. & Lost Ark Distilling Co. We will be changing things up a bit, a bigger Cornhole Tournament, Artists, Music, and more! Stay tuned for details!

We can't wait to host the 10th Annual Curing Coats Fundraiser next JUNE and we hope to see you there. If you are interested in donating to this cause, please visit the Wilmer Eye Institute's donation page.

You may also donate by purchasing a t-shirt or hat at the event or by emailing us to place an order: curingcoatsfundraiser@gmail.com

when + where

Date: Sunday, February 22, 2025
Time: 7-10pm

Lost Ark Distillery 9570 Berger Rd. Columbia, MD 21046

Little details

Donations can be made at the door or online.
Event by invitation only, please RSVP via the QR code on the invitation. If you did not get an invitation via mail or text, and would like to attend, we would love to have you there. Please reach out to Barbi at 410-963-1051 to make that happen!
Open bar: 7-8:30pm.
Live music by Slade.
Dessert Bar.
Purchase a Curing Coats Fundraiser tumbler or Shirt at the door. Any donation amount.
Attire: “Winter Tropics” or “Saturday Night Out To Dinner” vibes.
Parking: The Warehouse District Lot , Off Gerwig Road & in the British Autocare Lot across the street.

Questions? Email curingcoatsfundraiser@gmail.com

Donate

Donate online at our Curing Coats Fundraiser page

Donate Here

These beer/cocktail cups turned out perfectly! Buy them at the check-in table the night of the event! — These beer/cocktail cups turned out perfectly! Buy them at the swag table & at the Lost Ark Bar when ordering your drink!

donate by purchasing a fundraiser Tumbler & T-shirt

In addition to direct donations, we are also selling tumblers and shirts at the event. You can order a drink at Lost Ark and for $10 more keep your Curing Coats Tumbler!. Or, make a donation at the swag table of any amount and choose your gear!

Founded in 2016 by Sean's best friend, Jack Pavlovcak, Shots for Coats has continued to amaze all of us each and every year. Jack wanted to help Sean raise funds and came up with the idea to shoot basketballs and get pledges for the amount of baskets he made. Jack's idea turned into over $48,000 being raised in just 9 years! It is amazing what our youth can make happen!

Shots for coats is the perfect extension of the Curing Coats Fundraiser. If you are interested in starting your own local Shots For Coats, please email Barbi at blsmole@yahoo.com.