Turner Syndrome Foundation
Each April, we celebrate National Volunteer Week and Global Volunteer Month. Nonprofits, especially small organizations like the Turner Syndrome Foundation (TSF), rely heavily on volunteers to carry out their missions. We at TSF are so grateful for our volunteers; we could not do what we do without them! Let’s look at an interesting study on volunteerism as a driver of nonprofit success and recognize our wonderful volunteers!
National Volunteer Week & Global Volunteer Month
National Volunteer Week, created by Points of Light, is celebrated April 16th through the 22nd this year. It is an opportunity to recognize the impact of volunteer service. Volunteers have the power to tackle society’s greatest challenges, build stronger communities, and be a transformative force. National Volunteer Week takes place every April during Global Volunteer Month, which is a time to celebrate volunteers around the world who actively support their communities through volunteerism and civic action.
So let’s shine a light on the people and causes that inspire us to serve, recognizing and thanking volunteers who lend their time, talent, and voices to make a difference in their communities. At TSF, we could not do what we do for the TS community without our dedicated volunteers. Together we can make a difference!
How Volunteers Contribute to Nonprofits' Success
As nonprofits need more help in the aftermath of a global pandemic, studies find that volunteers are even more key to their success. With the number of volunteers decreasing, many nonprofits find themselves in a difficult spot. The Initiative for Strategic Volunteer Engagement, together with the Do Good Institute at the University of Maryland’s School of Public Policy, released new insights from over 1,000 nonprofit leaders and more than 100 funders about the state of U.S. volunteer engagement.
Drs. Nathan Dietz and Robert T. Grimm, Jr. from the Do Good Institute conducted the first-of-its-kind quantitative study on strategic volunteerism, “The State of Volunteer Engagement: Insights from Nonprofit Leaders and Funders.”‘ This study is being released together with a new study on funding volunteerism,
“Investing in Strategic Volunteer Engagement: A Qualitative Study,” led by consultant Dr. Sue Carter Kahl.
At the same time, the Initiative for Strategic Volunteer Engagement, a new effort of funders and nonprofits who believe in the power of volunteers to expand impact and maximize mission success, was stood up. This group provides practical tools and resources to help nonprofits connect with their volunteer networks and encourage funders to further invest in strategic volunteer engagement. The Initiative also plans to release the Strategic Volunteer Engagement Playbook, a manual for funders and nonprofits to learn how to use the power of volunteering to advance organizational goals and impact.
Since the COVID pandemic began, the demand for nonprofit services has increased, as reported by the Do Good Institute At the same time, nonprofits are operating with less funding and staff than they had before. According to Dietz, “this gap in funding and staffing makes volunteers even more important for many nonprofit organizations.”
Nonprofits are challenged not only by finding and recruiting the right volunteer support, but also by the capacity and infrastructure needed to sustain volunteer engagement. And that requires funding. “This research will be used to spark a national conversation for greater philanthropic investment in strategic volunteer engagement – and to equip more nonprofits to embrace strategic volunteer engagement for greater impact,” said Jeffrey Glebocki and Betsy McFarland, co-directors of the Initiative.
“One reason we calculate the value of volunteer time is because it reminds us that volunteering may be priceless, but it isn’t free,”
How Volunteering Can Benefit YOU
While volunteering has a huge benefit for nonprofits, it can also benefit you in a big way! Community service has been incorporated into many high school curricula. Colleges look at what volunteer services their applicants have provided as part of their acceptance criteria. Volunteering can help students decide which career path they may want to take.
When you contribute to a cause bigger than yourself, you have the amazing opportunity to be a part of real change and learn what really matters to you. This is a valuable life lesson to learn before you step out on your own for the first time and can help you develop empathy and compassion.
Volunteering can also have benefits after you have developed a skillset for a job and entered the workforce. There are always life lessons to learn. Volunteering and sharing your skills to help others can allow you to meet new people and develop mentoring skills, which can help you do your job better. Volunteering can also provide you with the opportunity to teach and inspire others to develop skills in your field, or to find a job similar to yours.
You may feel that one person cannot make a huge impact, but in the words of Rachel Joy Scott, a victim of the Columbine High School shooting, before her death, “if one person can go out of their way to show compassion, it can create a chain reaction of the same.”
Meet Some of TSF's Amazing Volunteers!
TSF relies on its volunteers to fulfill its mission of awareness, advocacy, education, and research. It takes a team to do what we do, and we are so fortunate to have our incredible team of volunteers. Below are just a few of them.
Karen Green, Blog Writer
Karen is a top-notch volunteer blog writer for TSF. Our blog is so important for sharing our stories, sharing information, and
building community, and Karen is an excellent writer and contributor to that mission. She has written several articles during her time with TSF, including The Changing Workplace: New Opportunities for Work-Life Balance, Legislative Advocacy at TSF: Pursuing Lasting Change, and three My Story posts: A Fighting Spirit, Becoming My Own Advocate, and From Pregnancy Loss to Cast-iron Endurance. Look for another My Story post from Karen later this week about a woman who pursued IVF to fulfill her dream of becoming a mom.
Karen lives in Washington state with her husband, son, dog, and cat. She works as a Nursing Informatics Specialist. In her free time, Karen enjoys raising native bees, going on weekend adventures, and writing. Karen learned about TS and TSF when she was exploring volunteer writing opportunities. We are lucky to have her on our team!
Canon, Blog Writer & Awareness Working Group Member
Canon, a 17-year-old high school student from Southern California, volunteers both as a blog writer and an Awareness Working Group member. One of her major accomplishments was creating the Day in the Life series on TSF’s blog, which highlighted four wonderful individuals with TS–a girl, a teenager, a woman, and a senior woman–who exemplify strength and resilience, as well as a post about TS across the lifespan.
Canon also recently contributed to writing a post highlighting all of our accomplishments during TS Awareness Month 2023 and a post about our generous partners at Louisiana State University Women’s Basketball and Gordon McKernan Personal Injury Attorneys!
Canon was diagnosed with TS at birth, though volunteering at TSF was her first time meeting anyone else with the condition. Because of this, her experience volunteering with TSF has been especially meaningful and something for which she is very grateful. She has also started an Instagram called Turner’s Generation, where she posts community discussions and other
awareness-related content.
This amazing young woman plans to attend university in the fall (she is currently deciding where she’ll be attending) and looks forward to making new memories! Canon’s enthusiasm and initiative are greatly appreciated by TSF!
Bridget Malone, Legislative Advocacy Working Group Member
Bridget volunteers as a member of TSF’s Public Advocacy Working Group. She started a conversation with her local New York state representative and had February 2023 declared TS Awareness Month. She hopes that her accomplishment can be used as we work towards our goal of federal recognition.
Bridget lives on Eastern Long Island and works in the business office of the local hospital. She loves talking to the medical residents, since it may be the only exposure they have to TS before they go out and treat patients on their own. In her free time, Bridget likes to run (OK, maybe closer to walking) and being close to the ocean.
Public advocacy is an important way to communicate with legislators to spread TS awareness and improve patient care. Bridget is a shining example of how one person can make a difference and encourage others to do the same!
Dr. Catherina Pinnaro, Professional Member & Webinar Presenter
Catherina T. Pinnaro, MD, MS, is a TSF professional member and webinar presenter. She is a pediatric endocrinologist with training in genetics and a passion for TS. Dr. Pinnaro’s clinical areas of focus are diabetes management, specifically type 1 diabetes and atypical diabetes, with research interests in understanding why individuals with TS are at higher risk of developing the condition.
Dr. Pinnaro’s goal is to ensure that current screening recommendations are robustly identifying those with TS who are at risk of developing diabetes, and that treatments are tailored to this unique form of diabetes. Individuals with TS have a four-fold increased risk of developing diabetes compared to the general population. Screening for diabetes is recommended starting at age 10. Despite the high prevalence of diabetes, the best ways to diagnose and treat diabetes and pre-diabetes in TS patients are still unknown.
Dr. Pinnaro presented a very informative webinar titled Diabetes and TS: Diagnosis, Management, and Research in January. TSF is
grateful for experts like Dr. Pinnaro, who present these free webinars to further access to information for TS patients and caregivers.
Awareness Working Group
Hover over images to see captions. Click to enlarge.
Awareness is a key part of TSF’s mission; it can drive earlier diagnosis, improved treatment, and better support for those affected by TS. Our Awareness Working Group works tirelessly to raise their voices for TS.
Of course, one of the Working Group’s biggest efforts is planning and carrying out TS Awareness Month (TSAM) activities in February. That means preparing promotional and educational materials, creating social media content, planning daily and weekly challenges, working with legislators to promote TSAM proclamations at the local and state levels, talking about TS in the press, fundraising, and so much more! Read about all of our accomplishments during TS Awareness Month 2023 in our blog!
As exciting as TSAM is, it is important to keep the momentum going all year long! We can all use our voices for change. TSF is honored to have so many hard-working and dedicated volunteers to help us spread TS awareness. You are amazing!
"I really love everything [TSF] stands for and everything they do. As someone who has TS, they have been so helpful in educating and spreading awareness."
How YOU Can Make an Impact with TSF!
Volunteers play a critical role in the TS community. They bravely share the stories of their TS journeys, either through our blog or advocacy work. They bring awareness to many different groups of people about the signs and symptoms of TS and the need for early diagnosis, which improves the lives of those with TS and can literally save lives. TSF volunteers help to educate others through webinars and support groups, like Star Sisters and the 24/7 Caregivers Group. Our volunteers make a difference in the lives of those affected by TS.
Here are just some of the activities TSF volunteers take part in. Some are longer-term projects, and some are short-term Any amount of time you can offer is appreciated!
- Submit a My Story entry for the blog.
- Sign and share the Petition for Patient Care.
- Create a personal fundraiser.
- Host an awareness event or serve in the Awareness Working Group.
- Join the Legislative Advocacy Working Group to promote TS recognition and funding for better patient care.
- Write or design for the TSF blog.
- Become a professional member to network with other healthcare professionals, share information, present informational webinars, develop patient resources, etc.
- As a corporate supporter, partner with TSF on fundraising efforts, organize community educational events, set up workplace giving and in-kind donation initiatives, etc.
TSF needs your skills and enthusiasm! If you would like to contribute in any way to improving the lives of others with TS, please check out our Take Action page and complete the volunteer application. Everyone has something to offer!
Sources
National Volunteer Week, Points of Light
Global Volunteer Month, Points of Light
National Volunteer Month – April 2023, National Today
National Volunteer Month: Celebrating the “New” Volunteerism, Huffpost
New Research Reveals Volunteerism as Critical Driver of Nonprofits’ Success, Highlighting Opportunity for Funders to Build Nonprofit Capacity in the Post-Pandemic World, Initiative for Strategic Volunteer Engagement
Written by Caroline Walsh, volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2023
