This Volunteer Appreciation Month, we want to extend our deepest thanks to all of our incredible volunteers who make a difference every day. Each and every one of you plays a vital role in supporting the scleroderma community, and we couldn’t do this without your unwavering dedication and compassion.
This week, we’re spotlighting one volunteer from each of our chapters to highlight the amazing work being done across the country.
Jodi Lynn – Tri-State Chapter
1. How did you join the National Scleroderma Foundation?
I joined the National Scleroderma Foundation by way of the
Tri-State Chapter after being diagnosed in 2008.
2. What are some of the most meaningful projects and events you’ve participated in with the Foundation?
For several years, I helped form a team and participated in the Stepping Out to Cure Scleroderma walks in my area. Recently, our support group has held fundraisers in our local community and handing out awareness materials about the disease. We have even gained a few new members with this type of outreach.
3. What would you tell someone new to the Foundation about volunteering and getting involved?
I would recommend to anyone who has been diagnosed or is a
caregiver/loved one becoming a member of the Foundation for all of the benefits it provides. Ours is a complex and rare disease and having accurate information and support is vital to our mental and physical health.
Fundraising for National is very easy to do and becoming involved helps assist National in its mission and goals. It is a great group of people, and I am thankful to be involved.
Lisa Morrow – Mid-Atlantic Chapter
1. How did you join the National Scleroderma Foundation?
Lisa saw a posting on Volunteer Match.
2. What are some of the most meaningful projects and events you’ve participated in with the Foundation?
3 Stepping out to Cure Scleroderma walks.
3. What would you tell someone new to the Foundation about volunteering and getting involved?
It’s fun and feels right!
Tiffany Shank – Rocky Mountain Chapter
1. How did you join the National Scleroderma Foundation?
I’ve been a Scleroderma patient my entire life, so when I was in my early 20’s my doctor mentioned the National Scleroderma Foundation, and I’ve been involved ever since!
2. What are some of the most meaningful projects and events you’ve participated in with the foundation?
Stepping Out to Cure Scleroderma Walks, Patient Education Days, various fundraising events, Nationals conference & Advocacy.
3. What would you tell someone new to the foundation about volunteering and getting involved?
I would say getting involved and volunteering is so special. You get to participate in various fundraising events, walks, educational events, and help those events run smoothly for success. You get to meet other patients and caregivers that are affected by this disease. It’s also a lot of fun and is exciting! It’s nice to know that volunteering with a little bit of my free time can make a positive difference in the community!
As a Support Group Leader, I know that every month I get to make someone else’s life a little bit easier or a little bit better. That in itself is very fulfilling to me and gives me purpose. I’m taking this awful disease and turning it into great things and opportunities.
Janette Acevedo – Florida & Puerto Rico Chapter
Janette Acevedo, a dedicated member of our Central Florida group, has played a key role in the growth of our community. In 2024, she led the effort to secure the city’s first proclamation and organized the lighting of the Lake Eola fountain for Scleroderma Awareness Day, bringing members together in a meaningful way.
Her enthusiasm and commitment shine through in the meet-and-greet events she coordinates, helping to strengthen connections across our community.
1. How did you join the National Scleroderma Foundation?
I joined the National Scleroderma Foundation by googling and researching Scleroderma support groups. The National Scleroderma Foundation came up, I read on it joined the Central FL. group and then I joined the National foundation.
2. What are some of the most meaningful projects and events you’ve participated in with the Foundation?
The most meaningful projects have to be requesting a Scleroderma Proclamation and Light-ups and getting them approved by the Mayor of Orlando; Budy Dyer. It meant we were being heard and recognized. It was a great feeling showing up with my Scleroderma family to see Lake Eola fountain lit up in teal. I was really emotional because it made me feel I did something meaningful.
I thank Desiree James for her guidance and teaching me how to make the requests. I have attended one Scleroderma conference which is an amazing event because it allowed me to be informed, learn, meet people that have the same illness I have while having a good time too! Last but not least, I enjoy doing in person socials with my Central Florida group whom I consider family.
3. What would you tell someone new to the Foundation about volunteering and getting involved?
Get involved, advocate; we are in this together we must unite to be noticed and heard because “WE MATTER”
Beth Vukin – Rocky Mountain Chapter
1. How did you join the National Scleroderma Foundation?
After I was diagnosed in 2023, I saw on the foundation website that there was a online support group and I wandered into a Saturday morning zoom call and instantly met several people who had Scleroderma. I was so happy to meet others with the disease and the group has been a huge support to me.
2. What are some of the most meaningful projects and events you’ve participated in with the Foundation?
I did my first Stepping Out to Cure Scleroderma Walk in 2024. I was honored to tell my story as a new patient who also happens to be a physician. The best part was having others come up to me and tell me how much my story resonated with them and that they were not alone in the struggle for a diagnosis and to be taken seriously by doctors.
3. What would you tell someone new to the Foundation about volunteering and getting involved?
I know they tell you to make sure you have support with this diagnosis. There is nothing like support from people who have lived with this disease. 90% of what I know about Scleroderma is from my own lived experience and from the stories and advice from others with the disease.
Kelley Hill – Lower Great Lakes Chapter
1. How did you join the National Scleroderma Foundation?
My mother, Thelma Marie Hill, is the reason I started my fundraising journey and why I joined the National Scleroderma Foundation in 2012/2013. My mom succumbed to scleroderma in 2004, and up to that point, I’d been searching for ways to honor my mother’s legacy, and to bring awareness to the disease.
2. What are some of the most meaningful projects and events
you’ve participated in with the Foundation?
I’m biased, so I’ll say our family’s event – Bowl For Scleroderma: Thelma’s Silent Words,” is the most meaningful project/event thus far. However, I absolutely loved participating in the local Stepping Out for Scleroderma walks with Penny Davis and Wilma Will. Both of these women are inspirational and I love them dearly.
3. What would you tell someone new to the Foundation about
volunteering and getting involved?
If an individual is new to the Foundation and volunteerism, the hardest part is starting. Ask for help, attend meetings and local events, listen to and sit with friends living with Scleroderma and their families and caregivers. At times, volunteering and organizing events will be overwhelming, but keep going, celebrate the small victories along the way, and stay positive and true to your “Why.”
Brenda Fernholz – Upper Great Lakes Chapter
We’re excited to share that Brenda is now part of the Wisconsin Steering Committee! She’s jumped right in, helping plan and run our walk, health conferences, and meet-and-greet events.
Brenda’s been busy making calls to encourage folks to sign up – not just for our walk here in Wisconsin, but also for the Florida/Puerto Rico Walk. She’s also reached out to potential sponsors and is always the first to volunteer and show up at events.
Just a few days ago, after attending a webinar, she connected with the author of ‘Chronic Pain Management‘ and got them to donate a signed copy of the book for us to raffle off at the walk.
1. How did you join the National Scleroderma Foundation?
I came to join the NSF through participation in the WI Chapter’s first “Night at
the Ballpark” fundraiser and through a wonderful NSF volunteer, Cami Novachek.
2. What are some of the most meaningful projects and events you’ve participated in with the Foundation?
- Fundraising Walks
- Monthly Support Groups Meetings
- Educational Conferences
- Cookbook Recipes
- On-line Webnars and Presentations
3. What would you tell someone new to the Foundation about volunteering and getting involved?
Volunteering opens paths to inclusion in a caring, supportive and compassionate scleroderma family where you can help advance research, advocacy, education and awareness of the disease.
Dori-Ann Delatizky – New England Chapter
1. How did you join the National Scleroderma Foundation?
My mom was diagnosed with Scleroderma when I was younger. She battled the disease for over 20 years. She ultimately passed away from cancer in February 2024. She had told me about the conference in Nashville one year and we actually never made it to that conference. The National Scleroderma Conference in 2019 was in Chicago, IL. One of my best friends lives in Chicago and I was going to be in her wedding. You might be thinking, what does that have to do with NSF…Once I found out that conference was in Chicago and I was IN the wedding, I begged my mom to go to the conference and so we did and that’s when we did bridesmaid dress shopping too. It gave us an excuse to attend the conference. That was my first conference. I didn’t volunteer that year. Then Covid hit in 2020. My mom and I returned to volunteer for the Orlando conference in 2023 and I have been part of NSF since. I do the Boston walks and still volunteer at conferences.
2. What are some of the most meaningful projects and events you’ve participated in with the Foundation?
I have actually only been part of my local walks and conferences with the Foundation. However, I absolutely love participating. It’s so nice to see everyone working for the same cause and working to find a cure. I also participate in foundation supported support groups such as the caregiver and the bereavement support group. They have helped me so much through this journey with and without my mom.
3. What would you tell someone new to the Foundation about volunteering and getting involved?
It is such a humbling experience. It is honestly a little family. I have made lifelong friends by volunteering as a part of this foundation. I’m always looking forward to the next time I get to volunteer for this foundation.
Leeann Enix – Lower Great Lakes Chapter
1. How did you join the National Scleroderma Foundation?
After learning that I had systemic scleroderma in November 2023, I learned of the Foundation through an informational document I came across during an internet search.
2. What are some of the most meaningful projects and events you’ve participated in with the Foundation?
Organizing the first walk to be held in South Bend, IN with my husband is the first volunteer activity I’ve been involved with for the Foundation. It’s been an exciting experience so far!
3. What would you tell someone new to the Foundation about volunteering and getting involved?
I would tell them that volunteering for the Foundation is a meaningful endeavor. This destructive autoimmune disease has no cure. By volunteering, you can be a part of the movement that changes this fact!