After missing 2 years due to the Covid Pandemic we were finally able to host our 31st PMD Family Support Conference and as always it was a wonderful success!
We had ten families from six states, nine PMD males, ranging in age from 2 to 39 years old. Three families attended for their first time! Because our group was a bit small this year it allowed us to get to know the new families a bit more, as well as rekindle those old friendships!
Thursday evening we had a small group dinner at Steak n' Shake, and although ordering via the kiosk was challenging, the food and milkshakes were delicious as always!! Friday we hosted a Meet & Greet with some of the Genetic Counseling Students at Riley Children's Hospital, while the new families who wanted to see Neurology had their visits. We had a fair turnout from the staff considering they had somewhat short notice. We're already considering our options for next year and we're hopeful for an even better turnout then. It was a wonderful opportunity for those individuals to actually meet multiple individuals with PMD and see them in a non-clinical setting. Hopefully this will generate some additional interest in PMD! Dr. Walsh and Dr. Christensen were able to get everyone seen and out in time for a trip to the Indianapolis Motor Speedway! It was an exciting day for those who were able to go because there was practice and qualifications going on. We were treated to accessible parking, shuttle service, and seating behind the pit area, right near the yard of bricks (the start/finish line)! Afterwards there was time for some shopping and interactive fun before heading back to the hotel for pizza for dinner. Saturday we had the doctor's presentations at the hotel as usual. This year's speakers were: Dr. Larry Walsh, Dr. Celanie Christensen, and Genetics Counselor Lili Power. Jill Andrews, one of our PMD moms, recorded the presentations for us and we will be making them available in the near future for those interested. Our wonderful group of volunteers Kayleigh, Taylor, Trinity, Abby and Jr Volunteer Jayce, provided child care during the medical presentations. We had Subway for lunch on Saturday and in the evening we did our traditional Buca Di Beppo Dinner. Due to Covid we opted to have Buca set up in our meeting room buffet style. Although we missed the traditional parade to Buca, the food was still great and it even allowed for a little more socialization during and after dinner. After dinner we had lots of fun and laughs with cake, Song Bingo, and Karaoke! As always we had many opportunities for visiting and some semi-late night chats, Patti is getting old!! (I'm guessing the security officers appreciated not having to break up any late night lobby gatherings this year.. lol)
We're so glad that things are returning to "normal" and we're planning to continue our annual family support conference for many years to come. We cannot say thanks enough for all the generous cash donations, Facebook and other fundraisers, gift cards, Amazon purchases, time, talents, etc.! It really helps us stretch our budget and make the conference less costly for those attending. In addition to providing meals, snacks, t-shirts, gift bags, etc., those donations helped us provide one free night for all the families attending, free valet parking for all those who drove, and sponsor the full hotel cost for two new families!!
We hope to see you all and many more next year, you all make everything we do a true labor of love!!
If you would like to make a tax deductible donation for our Annual PMD Family Support Conference you may do so by clicking here.
We had ten families from six states, nine PMD males, ranging in age from 2 to 39 years old. Three families attended for their first time! Because our group was a bit small this year it allowed us to get to know the new families a bit more, as well as rekindle those old friendships!
Thursday evening we had a small group dinner at Steak n' Shake, and although ordering via the kiosk was challenging, the food and milkshakes were delicious as always!! Friday we hosted a Meet & Greet with some of the Genetic Counseling Students at Riley Children's Hospital, while the new families who wanted to see Neurology had their visits. We had a fair turnout from the staff considering they had somewhat short notice. We're already considering our options for next year and we're hopeful for an even better turnout then. It was a wonderful opportunity for those individuals to actually meet multiple individuals with PMD and see them in a non-clinical setting. Hopefully this will generate some additional interest in PMD! Dr. Walsh and Dr. Christensen were able to get everyone seen and out in time for a trip to the Indianapolis Motor Speedway! It was an exciting day for those who were able to go because there was practice and qualifications going on. We were treated to accessible parking, shuttle service, and seating behind the pit area, right near the yard of bricks (the start/finish line)! Afterwards there was time for some shopping and interactive fun before heading back to the hotel for pizza for dinner. Saturday we had the doctor's presentations at the hotel as usual. This year's speakers were: Dr. Larry Walsh, Dr. Celanie Christensen, and Genetics Counselor Lili Power. Jill Andrews, one of our PMD moms, recorded the presentations for us and we will be making them available in the near future for those interested. Our wonderful group of volunteers Kayleigh, Taylor, Trinity, Abby and Jr Volunteer Jayce, provided child care during the medical presentations. We had Subway for lunch on Saturday and in the evening we did our traditional Buca Di Beppo Dinner. Due to Covid we opted to have Buca set up in our meeting room buffet style. Although we missed the traditional parade to Buca, the food was still great and it even allowed for a little more socialization during and after dinner. After dinner we had lots of fun and laughs with cake, Song Bingo, and Karaoke! As always we had many opportunities for visiting and some semi-late night chats, Patti is getting old!! (I'm guessing the security officers appreciated not having to break up any late night lobby gatherings this year.. lol)
We're so glad that things are returning to "normal" and we're planning to continue our annual family support conference for many years to come. We cannot say thanks enough for all the generous cash donations, Facebook and other fundraisers, gift cards, Amazon purchases, time, talents, etc.! It really helps us stretch our budget and make the conference less costly for those attending. In addition to providing meals, snacks, t-shirts, gift bags, etc., those donations helped us provide one free night for all the families attending, free valet parking for all those who drove, and sponsor the full hotel cost for two new families!!
We hope to see you all and many more next year, you all make everything we do a true labor of love!!
If you would like to make a tax deductible donation for our Annual PMD Family Support Conference you may do so by clicking here.
