Walk & Roll 2023

A great big thanks to everyone who attended Walk & Roll 2023! The Arizona event was attended by over 55 people and raised over $8,000! Together, we are moving closer to a cure for FSHD.

Beep, beep!

Opening Remarks

Welcome! On behalf of Red Scooter Riders, Team Sam, and the FSHD Society, we welcome you to Encore’s 3rd annual Walk & Roll to Cure FSHD. A special welcome to those who traveled from afar to join us here this morning: from Florida, Texas, California, Connecticut, Tucson, and as far away as Encore Unit 1062 across the street. (Hi, Mark!) Your being here this morning makes a positive difference in raising awareness and the necessary funding to find effective treatments for this challenging form of muscular dystrophy.

And the donuts are really good, too! Thanks to Lou and Scott for picking those up for all of us.

Let’s put the sugar and caffeine to good use by first saying hello to one another. If you’ll please turn to the people next to you and introduce yourselves to your fellow walk and rollers.

How many of you are here for the first time? Let’s give them a round of applause! Second time? And, who has walked and rolled with us every year? Whether it’s your first time or your third, know that you are being joined by other Walk & Roll teams internationally, all to find a cure for this crummy disease called FSHD.

These walks are taking place at various locations over the course of the next couple months; ours here in Scottsdale is one of the first. And together, with Team Sam, Red Scooter Riders has raised over $8,000 this year so far. We’re delighted and grateful to report that every single donation made, up to $250,000, is being matched by the Lai family, who are long-standing members and supporters of the FSHD community. Last year, the international event raised close to $1 million, and is targeted for the same amount this year. Serious money and awareness-raising like this is what it takes to move the needle closer to a cure.

So, where are we exactly in terms of a cure? The FSHD Society still targets 2025 to find effective treatments. Pharmaceutical companies are actively holding clinical trials for drugs, and geneticists are investigating gene therapy. Claire and Sam and anyone with FSHD eagerly await production and approval of these therapies by the FDA.

Ashley Ferreira, from the FSHD Society, is here with us today. Ashley, could you tell us a little bit more about the work being done to find a cure and how this fundraiser makes a positive impact?

(Ashley speaks)

Thanks, Ashley.

Curing takes care of the body; healing takes place in the spirit. Until the cure is found, a lot of healing is possible through events like these. Every neighborly hello, every trivia game played at the pool, every shared meal, every physical and occupational therapy session, every fundraiser and donation, and every visit to cheer on the families impacted by FSHD brightens the soul. Just being here today makes all of you healers and warriors in successfully meeting the challenges of those living everyday with FSHD.

Healing from FSHD also comes through compassionate, professional caregiving. And we have exceptional caregivers here today. We would like to take a moment to acknowledge them.

Kimberly: Claire just loves a day when Kimberly can substitute care-give. These two are like two cherries on one stem when they get together. Claire and Kimberly can finish each others sentences, and can really put the heat on Lou when it comes to Scrabble. And don’t get me started on their mutual love for BLTs. In just a few minutes, Kimberly will draw for door prizes. So stay tuned for some fun with her.

Jayla: Relatively new to Claire’s caregiving team, Jayla is a delight. She sings, even boogies sometimes to the music, and cheers Claire on, often when she needs it most. I would like to add, she bakes up a darn tasty chocolate walnut cookie! We are all grateful for Jayla’s skills, strength, and presence.

Josh: The ability to stay creative and purposeful while living with a chronic disease is a great source of healing for Claire, and no one helps her more in staying creatively productive than Josh. He is not only a graceful, mindful, and talented caregiver, but he is also the perfect creative partner for Claire. For each other really. Together this dynamic duo has brought healing to others living with FSHD through a podcast, blogs, a documentary, and these fundraisers. And I have a feeling they are just getting warmed up. Stay tuned. Claire and I are forever grateful to this talented young man for sharing the journey.

Lou, Ally, & Marie: As a spouse or parent living and caring and loving a family member with FSHD, the sacrifices you three make as caregivers cannot be expressed in words. But we will try.

Marie not only cares for her husband, but she is also on the FSHD Society board.

Ally, who’s also active in the FSHD Society, is raising a confident and inspiring young man in Sam.

And there’s Lou, who wears many hats in caring for Claire so very well. He is a loving husband, skilled breakfast chef, talented aqua therapist, sunset tour operator, a willing participant in our creative projects, nighttime companion, and so much more. But rumor has it: his Scrabble game is lacking a little.

Seriously, Lou’s commitment, Ally’s commitment, and Marie’s commitment through sickness and health makes healing possible every day and every night.

A big round of applause for all the caregivers!

Thanks again to everyone for being here.