This month, we are proud to feature the Nawrocki family of Minnesota in our volunteer spotlight. This family of four includes Tyler, Erin, Ava, 4, and Aliana, 2. And don’t forget their dog, Mila!
When they aren’t volunteering for the National Foundation for Ectodermal Dysplasias (NFED), they enjoy family time at the lake and spending time with their extended family, neighbors and friends.
Ava loves her sister fiercely and all things princess, unicorns, and mermaids! She recently started gymnastics and looks forward to going each week.
Ava is also a water lover, whether that’s the lake, pool, or even the bath tub. Her sister, Aliana, loves to follow Ava. Both girls are in Spanish immersion daycare and love singing and dancing together.
Ava has a type of ectodermal dysplasia called acro-dermato-ungual-lacrimal-tooth (ADULT) syndrome. She was clinically diagnosed around six months old and was confirmed shortly after, through exome sequencing that she had the TP63 mutation.
Read on as Erin talks about their experience in volunteering for the NFED.
Share a little about your project you worked on for the NFED.
We were very fortunate to connect with the Nelsen family and have participated and helped with the Don’t Sweat It Minnetonka 5K in Minnesota for the past three years. My previous employer hosted a Janssen Cares Day in 2019 in which I nominated the NFED for.
Ava recorded a short video that led to approximately $4,000 being donated to the NFED and further awareness/advocacy throughout the nation.
Family, friends, and colleagues have continued to be generous and show tremendous support through words and donations to the NFED throughout the years, since sharing about Ava’s diagnosis in 2016.
When did you begin volunteering with the NFED?
We began volunteering at the Minnetonka 5K three years ago and each year, stepped it up more and more. This year, Tyler and I became co-chairs of this amazing event. We look forward to it each year and will continue to be part of this growing fundraiser.
Have you attended any Family Conferences?
We attended our first NFED Family Conference in 2019 and had an absolute blast! I was able to volunteer some at the conference and our entire family took away the best friendships (Ava still talks about Camille to this day) and a ton of information.
We were looking forward to attending in Washington D.C. for 2020 but are now awaiting 2021 Family Conference and have it marked on our calendar already!
What prompted you to volunteer for the NFED?
The NFED has been absolutely amazing. With Ava’s condition being a random gene mutation, we did not have family to go to to learn. The wealth of information we receive, the updates on research, the programs, the assistance – we are so grateful.
We are so thankful to have found the NFED and were lucky to have connected with local families. We wanted to give back, help others and continue to show Ava what a strong supportive community she is a part of.
What was the most powerful moment you had while volunteering for the NFED?
I would have to say the Don’t Sweat It Minnetonka 5K. I’m blown away each year by all of the love and support. Last year, my husband and I cut our hair (16 inches and 9 inches off) as an extra fundraiser at the event to help with wigs for children.
This year, even with COVID restrictions, there was an abundance of love and support! It was overwhelming and emotional. Who would have thought that a virtual event would raise close to $45,000? Our family was a part of that historical event.
Wow. Karl Nelsen did an amazing job as Master of Ceremonies. Lea Richardson at the NFED was a huge help and support to us. This was unfamiliar territory for all of us and we did it!
What was the most challenging?
I think initially, the most challenging thing with volunteering with the NFED, was figuring out where and what to begin with – especially being slightly overwhelmed initially with a new diagnosis. But, once we took a breath and did more research, thankfully, the NFED made it fairly easy and offered many suggestions on how to raise awareness and funds.
The NFED connected us with Karl and Nancy Nelsen in our area who had already established a 5K. So, we offered our help and support. It has been a blast ever since.
How has this role affected other areas of your life?
It has been a very positive experience. Yes, it takes some time management but it is completely doable. It gives us a small opportunity to give back.
Would you recommend volunteering for the NFED to others who are able?
Yes. 100% in any capacity you can. As Ava would say, “Just do it”.
What have you learned/taken away from your experience?
People are amazing, kind, and generous. We are all in this together. Together, we can make an impact and a positive difference in someone else’s life. There is a great support system out there: family, friends and the NFED.
You just have to take the initiative to get started and build on the year before. Being part of a fundraiser or starting your own fundraiser for the NFED is rewarding. It makes you feel good. We love the connections we have made as a family.
What’s your favorite quote?
“In every day, there are 1,440 minutes. That means we have 1,440 daily opportunities to make a positive impact.”Les Brown, Author
If you would like to volunteer for the NFED, check out the different ways you can help!Volunteer