DIANN SHADDOX FOUNDATION
DSF Changing the Future for Essential Tremor.
Learn how to support this organization
Mission
MISSION To advance knowledge and recognition of Essential Tremor to the world and find new treatments and a cure Purpose DSF's purpose and commitment is to expand understanding of Essential Tremor throughout the world along with critical information, medical research, and ease the suffering for everyone with ET. Impact The Diann Shaddox Foundation for Essential Tremors resolution is to support medical breakthroughs that will improve the lives of those affected by ET. Support work of the worldwide scientific community to benefit everyone with ET and their families. VISION: End Essential Tremor in our Lifetime & Unite the ET community.
Notes from the nonprofit
Letter from our Founder I started our Foundation with the specific purpose of helping everyone afflicted by Essential Tremor. The moment I learned how many people had tremors and stories so like mine, I wanted to send the message to the world that they aren’t alone. The disability of living with tremors are enough to cope with, but the stares and remarks and not able to do simple task can be devastating. Knowing others have your back and support can ease the suffering. Each year our Foundation has increased in momentum by uniting the ET Community. We have and are building a highly connected diverse network of industry leaders on our board and sponsors who believe in our vision to unite and strengthen the ET community, share knowledge and awareness, and bring together www.diannshaddoxfoundation.org We are also online with our private Facebook group Essential Tremor Worldwide https://www.facebook.com/groups/228566427550821 to help people worldwide living/dealing with ET.
Ruling year
2014
Executive Director
Mr. Randy Miles
Founder
Diann Shaddox
Main address
241 Boxelder Dr
Aiken, SC 29803 USA
EIN
47-1008505
NTEE code
Brain Disorders (G48)
Brain Disorders (G48)
Neurology, Neuroscience (H96)
IRS filing requirement
This organization is required to file an IRS Form 990-N.
Communication
Programs and results
What we aim to solve
DSF ET Program funds go to improve knowledge of Essential Tremor throughout the world and the medical community. Inspire young health professionals to specialize in the care of ET. Develop a better data system for sharing ET information around the world. Increase earlier treatment access for patients to find specialized care from movement disorder doctors. We work collaboratively with a highly connected network of industry leaders who believe in our vision to unite the ET community and to share our expertise and use informed decision-making in service of others to improve the quality of ET care. With partnership, teamwork, and focus there is change in the way the world views ET. Together with critical thinking and innovation, we are driving results by informing the world about ET and inspiring others to join us on our mission with our social media, media outlets, and ET Talks. DSF goal is to assist people suffering from hardships magnified by Essential Tremor.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Family Assistance Program
The Family Assistance Program is designed to help people who have hardship because they have uncontrollable hand, head, voice, leg, and body tremors.
FAP helps individuals & families living with uncontrollable tremors to live productive healthy lives. Many people living with ET lose their jobs or they are forced to take early retirement because of tremors.
FAP is a temporary assistance program and helps keep families safe and healthy through difficult times. The program offers several programs to eligible people by providing information & resources on government assistance, SS Disability, VA benefits, treatment resources, and assistance (when available) for food, fuel, & medicine.
https://www.diannshaddoxfoundation.org/family-assistance-program.html
Suicide Awareness Program for ET
DSF Suicide Awareness Program for Essential Tremor provides information and hope for individuals feeling hopeless and alone. Many people living with Essential Tremor feel alone and have a sense of worthlessness. Many lose their jobs and are bullied because of their tremors. Our goal is to let everyone know that you arent alone. If you know someone in crisis, get help as soon as possible. https://www.diannshaddoxfoundation.org/suicide-awareness.html
Stop ET bullying.
Bullying affects people of all ages afflicted with Essential Tremor (ET) in schools & workplace. DSF is adamant to improved knowledge of Essential Tremor throughout the world. Recruit Volunteers & Team Members to help spread information about Essential Tremor and Suicide Awareness. Provide support and tools. Distribute Information on Social Media Platforms and ET Campaigns about bullying. https://www.diannshaddoxfoundation.org/stop-et-bullying.html
DSF Medical Research Program
The DSF Medical Research Program is driven to find a cause and cure for Essential Tremor. We believe with research, medicines, therapies, & alternative treatments will be discovered.
Our foundation supports research performed by world-class scientists/investigators, based on solid empirically supported theory, practical experience, which will build a knowledge base on scientific proof.
Our Essential Tremor medical research program is uniquely focused on improving quality of life and revealing the latest treatments for Essential Tremor whether it is the cutting-edge medications or surgeries and to find a cure for ET.
Annually, we partner with leading researchers and institutions to support research that shows promise to help change how people live with ET.
Guided by our Medical Advisory Board, DSF has joined research studies focused on interventions that affect quality of life for ET Patients. https://www.diannshaddoxfoundation.org/dsf-medical-research.html
Essential Tremor Program
DSF Worldwide Essential Tremor Program purpose and commitment is to expand understanding of Essential Tremor throughout the world along with critical information, medical research, and ease the suffering for everyone with ET. DSF ET Program funds go to improve knowledge of Essential Tremor throughout the world and the medical community. Inspire young health professionals to specialize in the care of Essential Tremor. Develop a better data system for sharing Essential Tremor information around the world. Increase earlier treatment access for patients to find specialized care from movement disorder doctors. DSF's goal is not only offering hope and assistance for people suffering from hardships magnified by Essential Tremor, but we will not stop until the world recognizes Essential Tremor, and we find the latest treatments whether it is the cutting-edge medications or surgeries and find a cure. www.diannshaddoxfoundation.org
DSF NATIONAL EDUCATIONAL INITIATIVE PROGRAM for CHILDREN
The Children Educational Initiative Program includes educating our school systems about Essential Tremor.
We are working with Legislators and Educators on a pilot program to inform Principals, Teachers, and school Nurses about Essential Tremor.
Our goal is to help them identify and become aware of symptoms of ET in children in their classroom.
Children, all ages from very young to college, are not only bullied by their peers, but by teachers and principals. It isn't because the teachers and principals are cruel, but because of a lack of knowledge.
https://www.diannshaddoxfoundation.org/children-ed-initiative-program.html
Where we work
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsNumber of high-profile speakers or participants participating
This metric is no longer tracked.Totals By Year
Related Program
Essential Tremor Program
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
DSF ESSENTIAL TREMOR Program Worldwide & ET Talks Meetings
Number of individuals attending community events or trainings
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults, Children and youth
Related Program
Essential Tremor Program
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
DSF ET Program improve knowledge of Essential Tremor throughout the world and the medical community. Inspire young health professionals to specialize in the care of ET. Develop a better data system.
Number of audience members saying issue is important to them
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults, Children and youth
Related Program
Essential Tremor Program
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
Approximately 100 - 160 million worldwide suffer from Essential Tremor Due to the aging population, the number of individuals with ET is expected to experience annual double-digit growth.
Estimated number of funding dollars secured for the sector
This metric is no longer tracked.Totals By Year
Population(s) Served
Health
Related Program
Essential Tremor Program
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Number of new advocates recruited
This metric is no longer tracked.Totals By Year
Population(s) Served
People with disabilities, People with diseases and illnesses
Related Program
Essential Tremor Program
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
Together with critical thinking and innovation, we are driving results by informing the world about ET and inspiring others to join us on our mission.
Goals & Strategy
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
MISSION To advance knowledge and recognition of Essential Tremor to the world and find new treatments and a cure.
Executive Summary
Diann Shaddox Foundation for Essential Tremor (DSF) is a 501 (c)3 nonprofit exists to bring awareness and find new treatments to ease the suffering for everyone with Essential tremor. Our purpose and commitment is to expand understanding of Essential Tremor throughout the world along with critical information and medical research. We are spearheading resolutions and backing medical breakthroughs that will improve the lives of those affected by ET and supporting work of the worldwide scientific community to benefit everyone with ET and their families.
Our organization has been active for nine years and runs highly successful programs. We take pride in the accomplishments weve made. DSF is not only made up of Doctors, Business Executives, but board members who are afflicted by Essential Tremor, along with DSF Founder Diann Shaddox.
What are the organization's key strategies for making this happen?
Marketing Plan
DSFs marketing program is designed to bring together leaders and visionaries from the biotech industry, scientists, business leaders, pharmaceuticals, investigators, Essential Tremor groups, and communities invested in discovering new treatments, devices, and a cure for patients with ET.
Each year our Foundation has increased in momentum by uniting the ET community.
Our foundation supports scientific collaboration research directed and performed by world-class scientists/investigators, based on solid empirically, practical experience, and scientific proof.
DSFs resolution is to back medical breakthroughs that will improve the lives of those affected by ET. Support work of the worldwide scientific community to benefit everyone with ET and their families.
Focus goal
Consumer statistics gain info on potential ET patients, consumer markets
Demographics
Economic indicators segment the population for targeting customers.
What are the organization's capabilities for doing this?
DSF funds go to broaden our reach across the United States and the world by expanding our presence through social media, marketing, and advertising. To accomplish our objective we need contributions, corporate sponsorships, and grants to fulfil our goal.
• Improving knowledge of Essential Tremor throughout the medical community.
• Inspiring young health professionals to specialize in the care of Essential Tremor.
• Developing a better data system for sharing Essential Tremor information around the world.
• Increasing earlier treatment access for patients to find specialized care from movement disorder doctors.
• Promote DSF Website
• ET Talks Events to discuss living with ET, Zoom, Facebook Live
• Fundraising online & In person events
• Recruit Volunteers & Team Members
• DSF Newsletter/Emails
• Create Videos, Articles
• Millions of Faces of ET events from around the world
• ET online Support Groups
• Newspapers, magazines, TV, radio, merchandise sales
• Distribute Information cards, Brochures, ET Medical Alert Cards & envelopes.
• Spread Social Media Platforms, ET Campaigns
• March ET Month, March 16 ET Day of Awareness & Giving
What have they accomplished so far and what's next?
DSF has a design in which to shape the way the world sees Essential Tremor. With the leadership of the Board of Trustee’s, volunteers, and partners we will promote the highest quality patient-centered ET care and change the future of ET. The platform’s comprehensive plan will help lead to a new time in advancement in ET medical research and help countless people around the world. DSF goal is offering hope and assistance for people suffering from hardships magnified by ET.
We work collaboratively with a highly connected network of industry leaders who believe in our vision to unite the ET community and to share our expertise and use informed decision-making in service of others to improve the quality of Essential Tremor care. With partnership, teamwork, and focus there is change in the way the world views ET. Together with critical thinking and innovation, we are driving results by informing the world about ET and inspiring others to join us on our mission with our social media, media outlets, and ET Talks.
DSF ET Program funds go to improve knowledge of Essential Tremor throughout the world and the medical community. Inspire young health professionals to specialize in the care of Essential Tremor. Develop a better data system for sharing Essential Tremor information around the world. Increase earlier treatment access for patients to find specialized care from movement disorder doctors.
US AND GLOBAL MARKET POTENTIAL
Approximately 100 - 160 million worldwide suffer from Essential Tremor
Due to the aging population, the number of individuals with ET is expected to experience annual double-digit growth along with increase in Individuals with a family history of ET.
Each year our Foundation has increased in momentum by uniting the ET Community. We have and are building a highly connected diverse network of industry leaders on our board and sponsors who believe in our vision to unite and strengthen the ET community, share knowledge and awareness, and bring together the medical community. Now is an exciting time for hope and optimism in ET research for new treatments and ultimately, a cure.
Our end goal is to ease the suffering and end Essential Tremor in out lifetime. We must tell our stories to the world so they will understand our tremors and bring hope and support. We are making a change and bringing ET to the forefront. We will not stop until the world recognizes Essential Tremor and we have found new treatments and a cure.
Together we will make a world without Essential Tremor.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
How is your organization using feedback from the people you serve?
To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
-
Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded
-
What challenges does the organization face when collecting feedback?
The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection
Financials
Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more
about GuideStar Pro.
Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
DIANN SHADDOX FOUNDATION
Board of directorsas of 03/07/2024
Mr. Randy Miles
Randy Miles Executive Director Corporate and Pension fund consultant (Retired)
Term: 2014 -
Dr. Darlene Lobel
Diann Shaddox Foundation
Term: 2022 -
Cheryl B Matteson
AT&T (Retired)
Stephen Foster
USN-R Submarine Nuclear Propulsion Program
William E Hazel
Director at Cedar Wealth Management
Darlene A Lobel
Neurosurgeon & Neuroscientist
Diann Shaddox
Author
Drew Christensen
Living Health Functional Medicine
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
-
Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
The organization's co-leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
Equity strategies
Last updated: 01/27/2023GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We disaggregate data by demographics, including race, in every policy and program measured.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We use a vetting process to identify vendors and partners that share our commitment to race equity.
- We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.
Thanks for signing up!
An email has been sent to the address you provided. Click on the link in that email to get more GuideStar Nonprofit Profile data today!
(Don't see an email in your inbox? Click here to resend it.)
GuideStar Pro Reports
Report successfully added to your cart!
Want more data?
A GuideStar Pro report containing the following information is available for this organization:
Download it now for $125.
Need the ability to download nonprofit data and more advanced search options?Consider a Pro Search subscription.