What our families have to say about the Annual PMD Family Support Conference...
Special thanks to Jill Fuego Andrews (one of our awesome and talented PMD moms) for creating this video.
More from our families...
"Our family enjoys having the opportunity to discuss issues that are important and relevant to us with people who understand and we find that primarily at the PMD family conference." ~ Meade family
"Our family attends the PMD conference because it's a weekend where we all have the same "problem" - PMD. We enjoy spending the weekend with our "extended family" - we have fun times, lots of laughs and a few hyjinks!" ~ Gasperetti family
"We attend the PMD family conference because it's "family". We are all unique and special but fit together as one for friendship, information and fun." ~ Tryba family
"We attend the annual PMD family conference because its a time where all the kids belong and where you can find hope and an assurance that you are not along. Friendships are made and even if we only see each other once a year, we care and grow to love one another." ~ Jessurum family
"When we attend the PMD family conference, we first hear the laughter at the front desk, then finally see it in the lobby, and get the joy that everybody is sharing." ~ Candelaria family
"Our family came to the PMD family support conference because we wanted to meet other PMD families and kids and share thoughts and ideas, and then our grandson Andy decided it was too far for him to travel sitting in the wheelchair and we aren't able to go any longer so we talk facebook!" ~ Carter family
"We love going to the PMD conference to connect with other PMD families, have a lot of laughs, and just feel accepted, and to be part of a great family. It's a great opportunity to connect, relax, and recharge." ~ Hibbets family
"We first attended of course to learn about the disease and the doctors that actually know about the disease and process. We also came to meet the PMD guru Patti and all the other families to receive insight and support, learn about any and all new treatments from specialist, and of course relax and enjoy good company." ~ Holland family
"Our family attends the PMD family conference because we have made some great friendships, gotten amazing advice, and never feel alone there." ~ Savauge family
"We attend the PMD family conference in Indy because being with all the families makes our work more meaningful." ~ Hobson family
"We attend the PMD family conference to see the doctors blow bubbles, to share a beer and vodka, to smoke stogies, to jam on a navigator bass, to play mound ball, and enjoy fireworks at the ball park, and to "sneak" out with the older boys to Hooters." ~ Candelaria family
"We attend the PMD family conference because "there is no place like home." Our first year we became part of a family. At the conference we feel comfortable to share...the good...the bad...and the ugly." ~ Chalupa family
"Attending the PMD family conference educated us about the disease and gave us a chance to meet other PMD patients and their families. It gave us hope, encouragement, and life time friendships." ~ Tinsley family
"When you attend the PMD family conference you will find a new family and you'll want to keep going back for the reunions..." ~ Simmons family
"The PMD family conference is the family reunion you want to attend, with family we choose instead of the reunion one has to attend. We attended our first conference in 2001. I left overwhelmed, but full of hope... the first hope I felt since Ashley's diagnosis. We have only missed 2 years since then and it's our family vacation." ~ Anderson family
"We attend the PMD family conference because Tommy can tell a joke and everyone understands the punch line without him having to repeat it." ~ Candelaria family
"The PMD conference helped our family understand the disease from a personal, family perspective. we learned what to expect in all stages of life. The conference we attended 11 years ago is still our most definitive view of the disease." ~ Lyons family
"We attended the PMD family conference last year as a newly diagnosed family. It was so important for us to connect with people who "got it" and who had traveled this hard and uncertain road well before us." ~ Henderson family
"I return to PMD family support conference every year because I want to go Hooters with my PMD brothers to celebrate my birthday..." ~ Chalupa family
"My family and I attended the PMD family conference when my son Russ was newly diagnosed and was between 2-3 years old. it was a good experience to meet other families and children with his diagnosis, since it is so rare and information was scarce. the conference was well planned and we enjoyed it very much!" ~ Battles family
"We attended the conference in Indianapolis, Indiana when my son was just over a year old. We were curious to see what types of things the boys a few years older than our son could do or were dealing with and just how other boys with PMD acted in general. over the course of the weekend our questions were answered but we also gained a renewed sense of faith and confidence in ourselves. All of the doubt that once clouded our minds was gone. We can embrace what we were handed and be truly happy doing so." ~ Andrews family