Turner Syndrome Foundation
September 11th is a National Day of Service in the U.S. Serving your community benefits both you and others. One community you can serve is those affected by Turner syndrome (TS). The Turner Syndrome Foundation (TSF) supports advocacy, awareness, education, and research for this community. Join us on the 11th and every day in service to your community!
9/11 National Day of Service
The 9/11 National Day of Service and Remembrance, or 9/11 Day, is a federally recognized observance that occurs on the anniversary of the September 11, 2001 terrorist attacks. The purpose of this day is to not only remember and honor those killed and injured on 9/11, but also the brave first responders, recovery workers, volunteers, and members of the U.S. military who selflessly responded to the attacks. Service activities on this day have traditionally included charitable service in the form of volunteering, donations to charities, and simple good deeds.
Charitable Service
Charitable service is generally defined as doing something for someone else without the intention of receiving a reward or money. Service benefits someone other than the person providing it and is performed voluntarily, out of the desire to help others. Charitable service further entails being kind, forgiving, and generous to those in need. It brings people who care about a cause together so they can make a difference by providing either direct help or by raising awareness of an issue.
The Impact of Serving Your Community
Serving your community is one form of charitable service. Volunteering one’s time to help members of a community benefits both the volunteer and those being served.
Receiving help from volunteers is impactful because, unlike receiving help from family or friends, there is no sense of obligation on the part of the volunteer. A volunteer acts on their own convictions, which makes service efforts meaningful for both them and community members. When a volunteer chooses to look beyond themselves and serve others, they can take away valuable lessons and experiences, such as:
- connecting to the community by making it a better place in which to live;
- broadening horizons by helping the volunteer understand the needs of the population they are helping;
- bringing the volunteer closer to families and individuals in need and giving them first-hand experience and understanding of the needs of their community;
- improving and practicing how to socialize in diverse surroundings;
- developing and improving soft skills that are valuable in the workplace, such as teamwork, organization, planning, collaborative thinking, and leadership; and
- building empathy, which can lead to personal satisfaction and happiness
Serving the TS Community
One community you can serve are those affected by TS, a genetic condition that affects 1 in every 2,000 live female births. Individuals with TS usually have short stature, experience infertility, and may suffer from a variety of medical, cognitive, and psychological challenges.
Patients with TS need access to a number of medical, educational, social, and psychological resources to live full and independent lives. They require a lifetime of health care, from diagnosis and preventative monitoring to treatments.
Many individuals with TS lack access to accommodations and resources for coverage of medical costs. This is due, in large part, to lack of knowledge about TS among the general public, educators, medical professionals, policymakers, and corporate sponsors. That’s why spreading awareness and getting involved are so important!
How You Can Be of Service
You can be of service to the TS community in many ways. Direct donations help provide members of the TS community with access to the resources needed to mitigate the effects of the condition. Donations can be made here. You can also become an advocate for TS awareness and take direct action in support of the TS community. Continue reading to see how!
Advocacy
TSF advocates for TS awareness among businesses, corporations, politicians, and medical and educational professionals. The organization supports research initiatives and facilitates educational programs that increase professional awareness and enhance medical care of those affected by TS.
TSF also provides an Advocacy Toolkit for spreading awareness of TS and access to social media to promote advocacy efforts. Lastly, the organization provides information on how to organize volunteering efforts. Let’s look at legislative, public health, and self-advocacy efforts you can get involved in.
Legislative Advocacy
Individuals and groups can raise awareness of TS among elected officials through legislative advocacy. TSF’s legislative advocacy packet explains everything you need to know about this type of advocacy and how to perform it. With the knowledge and resources in the packet, advocates can establish relationships with elected officials by:
- contacting lawmakers to support specific TS legislation;
- signing the Petition for Patient Care, to be circulated to lawmakers; and
- joining TSF’s Legislative Advocacy Working Group, whose goal is to communicate with policymakers to improve quality of care for TS patients.
Public Health Advocacy
It is the responsibility of federal, state, and local health agencies across the U.S. to ensure the health and well-being of all patients by providing effective health and human services. These agencies are charged with the task of helping those in need gain access to critical resources. TSF sponsors its own health initiatives to determine whether federal, state, and local health agencies are addressing the specific needs of people with TS.
TSF encourages TS advocates to complete a survey to measure how different regions help individuals affected by TS. The organization then communicates the findings of this survey to health agencies to help them identify the resources needed by populations such as the TS community. TSF also uses this survey to create a network within and among various health agencies to exchange information and resources on TS.
Self-Advocacy
Individuals with TS can and should be their own advocates. Self-advocacy means being able to communicate specific needs, ask questions, problem solve, and make important health decisions. Knowing one’s rights and understanding one’s benefits helps create a path of empowerment and success. Self-advocacy can provide the tools and experience to take greater control over one’s own health and life.
Developing personal connections within the TS community, sharing information about the condition with others, and partaking in research opportunities can be rewarding and fulfilling. Those affected by TS can consult TSF’s resources, webinars, and the educational booklet “A Lifetime of Advocacy: What Individuals and Families Need to Know,” by Valerie A. Powers Smith, Esq., legal advisor to TSF.
Also, TSF’s private Facebook group, Star Sisters, is a place to seek support, ask questions, and build community. Star Sisters has monthly online get-togethers where patients, parents, and
caregivers can interact with others going through similar circumstances.
Direct Action
- Tell your story: Patients, parents, and caregivers can share their stories of their experiences with TS for TSF’s monthly series, My Story. Submit your story here.
- Volunteer: Give your time and expertise to support TSF’s mission. Apply here to volunteer as a researcher, blog writer, video editor, social media coordinator, or business analyst, among other opportunities.
- Host an event: Bring people together to talk about and support TS initiatives at an indoor/outdoor party, a club, or a team. Learn more here.
- Sign the Petition for Patient Care here.
- Fundraise: Help provide funding for one of TSFs initiatives in the areas of awareness, advocacy, research, and education. Learn more here.
- Become a spokesperson for TS awareness: Represent the cause to create interest in and improve the understanding of TS. Learn more here.
- Network: Use your personal and professional networks to support TS initiatives sponsored by TSF.
- Become an Awareness Ambassador: Disseminate branded materials from TSF’s Awareness Toolkit.
- Become a TS support professional: Medical, legal and professionals are sought to lead as advisors or committee members in support of TSF’s mission. Join TSF’s professional initiatives here.
- Host a WE Learn webinar: Submit a proposal here to make a presentation as part of TSF’s free webinar series
- Become a corporate partner: Help facilitate education programs and outreach to the professional communities in support of the TS community. Learn more here.
- Form a professional partnership: Ensure that individuals with TS will benefit from advocacy, education programs, and new science in the form of research, events, or volunteerism.
- Form a media or celebrity partnership: Media and celebrities can lend their voice to TSF’s initiatives. Learn more here.
- Join the National Council of State Leaders (NCSL):TSF is building a team of professional and patient advocate leaders. Learn more here.
There are so many ways to be of service to your community–get involved now!
Sources
- Join the 9/11 National Day of Service, 9/11 Day
- September 11 National Day of Service, Wikipedia
- 9/11 Day, AmeriCorps
- National Days of Service, National Association of Volunteer Programs in Local Government (NAVPLG)
- The Importance of Service in Strengthening Communities, Stevenson University Online
- Here’s Why Community Service Is Important – Top 5 Benefits, Habitat for Humanity of Broward
Written by Ray Cappo, TSF volunteer blog writer, and edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2022
