DIANN SHADDOX FOUNDATION
DSF Changing the Future for Essential Tremor.
DIANN SHADDOX FOUNDATION
EIN: 47-1008505
Mission
MISSION To advance knowledge and recognition of Essential Tremor to the world and find new treatments and a cure. VISION: End Essential Tremor in our Lifetime & Unite the ET community. Improved knowledge of Essential Tremor throughout the medical community, first responders, and school systems. 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.
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
Neurology
Brain and nervous system disorders
Population served
Children and youth
Adolescents
Adults
NTEE code
Brain Disorders (G48)
Brain Disorders (G48)
Neurology, Neuroscience (H96)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990-N.
Tax forms
Communication
Programs and results
Reports and documents
Download annual reports Download other documentsWhat 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 Diann Shaddox Foundation for Essential Tremor Family Assistance Program is a program designed to help people who have a hardship because they have uncontrollable head, voice, leg, hand, and body tremors, the largest movement disorder in the world.
The DSF Family Assistance Program is a temporary assistance program and helps keep families safe and healthy through difficult times. The program offers several programs to eligible people and will assist families with basic Essentials like food, gas, help children with school supplies, and medicine.
This program is designed as a short-term assistance program while families reestablish their income needs.
A Team DSF committee will choose participants. http://www.diannshaddoxfoundation.org/family-assistance-program.html
Suicide Awareness Program for ET
Suicide Awareness Program for ET
Find Hope & Recovery
You aren’t alone
If You Know Someone in Crisis get help as soon as possible.
Call the toll-free suicide contact for help 24 hours a day, 7 days a week. Find hope and recovery
Stop ET bullying.
Bullying is a universal problem. DSF is adamant to stop the bullying of people afflicted with ET, not only children but people of all ages.
ET is a disability and the world needs to show respect. Most people don’t understand ET so it brings on bullying because of ignorance when they see people’s hands, head, voice tremor and shake they think it is funny.
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 by lack of knowledge.
What can you do to make a difference and changes lives?
Join the fight. Get involved learn about Essential Tremor. Talk to your children. https://www.diannshaddoxfoundation.org/stop-et-bullying.html
DSF Medical Research Program
The Diann Shaddox Foundation for Essential Tremor Medical Research Program is set-up to reveal the latest treatments for Essential Tremor whether it is the cutting-edge medications or surgeries and to find a cure for ET. DSF is determined to advance treatments that can slow, stop, or reverse the progression of Essential Tremor. https://www.diannshaddoxfoundation.org/dsf-medical-research.html
Essential Tremor Program
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.
DSF NATIONAL EDUCATIONAL INITIATIVE PROGRAM for CHILDREN
DSF Educational Initiative includes educating our school systems about Essential Tremor. Team DSF is working with Legislators and Educators on a pilot program to inform Principals, Teachers, and school Nurses about Essential Tremor. Helping them to identify and become aware of symptoms of ET in Children in their classrooms. Recent research indicates that 5 out of every 100 children under the age of 20 has Essential Tremor. That number is staggering, and represents a significant increase in the incidence of ET in children from even ten years ago. https://www.diannshaddoxfoundation.org/dsf-educational-initiative-program.html
Where we work
External reviews
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
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 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
Learn 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.
VISION: End Essential Tremor in our Lifetime & Unite the ET community. Improved knowledge of Essential Tremor throughout the medical community, first responders, and school systems. 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.
What are the organization's key strategies for making this happen?
DSF ET Program is bringing the term Essential Tremor along with education, awareness, and research to the world. Our staff and supporters are dynamic and diverse. Our skills are different, our professions are varied, but our mission is the same; find new treatments, and support to everyone living with Essential Tremor.
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.
Although the disorder is most common in older adults, it can affect individuals of any age including middle-aged or young adults and children. It has been reported during infancy. Our purpose is to help children learn to discuss and be open about their tremors and understand they aren’t alone.
DSF 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.
VALUES We set and maintain the highest ethical standards for ourselves and our programs, products, and services. We are known for our perseverance, optimism, and diligence that we bring to our mission. DSF has helped and will help millions of people who are suffering from Essential Tremor.
MERIT & GOAL: 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.
We take our ideals as a standard to be aimed at under vital consideration to advance treatments that can slow, stop, or reverse the progression of Essential Tremor.
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.
-
Who are the people you serve with your mission?
We work with everyone afflicted with Essential Tremor throughout the world. EQUALITY: We aim to promote fairness and justice for Essential Tremor disability no matter ethnic, cultural, or religious beliefs for everyone with Essential Tremor to enjoy full, healthy lives. Respect: We embrace the dignity and uniqueness of every person, being sensitive and empathetic to the needs of others. Diversity, Equity, and Anti-racism We commit to intentional action to be a fully inclusive, deliberately diverse, and anti-racist organization that respects and values the communities we serve. We will actively promote equity and social justice in neurology and the neurosciences. VALUES We set and maintain the highest ethical standards for ourselves and our programs, products, and services.
-
How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Social media,
-
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,
-
What significant change resulted from feedback?
MERIT & GOAL: 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. We take our ideals as a standard to be aimed at under vital consideration to advance treatments that can slow, stop, or reverse the progression of Essential Tremor.
-
With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners,
-
How has asking for feedback from the people you serve changed your relationship?
DSF has learned invaluable perspective 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.
-
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
Financial data
DIANN SHADDOX FOUNDATION
Revenue & expensesFiscal Year: 2022
SOURCE: Self-reported by organization
| Revenue | |
|---|---|
| Contributions, Grants, Gifts | $27,540 |
| Program Services | $802 |
| Membership Dues | $0 |
| Special Events | $0 |
| Other Revenue | $0 |
| Total Revenue | $28,342 |
| Expenses | |
|---|---|
| Program Services | $27,348 |
| Administration | $1,311 |
| Fundraising | $0 |
| Payments to Affiliates | $0 |
| Other Expenses | $0 |
| Total Expenses | $28,659 |
DIANN SHADDOX FOUNDATION
Balance sheetFiscal Year: 2022
SOURCE: Self-reported by organization
| Assets | |
|---|---|
| Total Assets | $23,024 |
| Liabilities | |
|---|---|
| Total Liabilities | $0 |
| Fund balance (EOY) | |
|---|---|
| Net Assets | $23,024 |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
Executive Director
Mr. Randy Miles
Randy Miles is the Executive Director of Diann Shaddox Foundation for Essential Tremor, a nonprofit he helped establish in 2014. DSF mission is to advance knowledge and recognition of Essential Tremor to the world and find new treatments and a cure for Essential Tremor.
Randy is a team-oriented Executive with 42 years of Business Marketing and Operations. He has an extensive track record of successful leadership and excellence in business development, sales, consulting, and account management. A passionate leader working with resolve to enhance the lives of everyone who will inherit or develop Essential Tremor and bring new treatments and find a cure for ET.
Founder
Diann Shaddox
Diann Shaddox is an author, speaker, and Founder of the Diann Shaddox Foundation for Essential Tremor.
Diann Shaddox is best known for her released books: A Faded Cottage, a SC love story about an artist with Essential Tremors; Whispering Fog, a time travel romance; Miranda, The Pink Rose, a historical fiction, a journal of a young girl living in the late 1800's; Spirits of Sacred Mountain, about a young Native American Indian boy's life spinning out of control and a magical mountain with deep hidden secrets; and The Gatekeeper of Crystal Pond, Not What Lies Above, but Below"; Southern Dreams Series. www.diannshaddox.com
She was diagnosed with Essential Tremor in 1982. She has since become an advocate for awareness and research toward finding a cure for ET. She created the Diann Shaddox Foundation for Essential Tremor March 2014.
Diann is a Native American and a member of the Wyandotte Nation of Oklahoma.
There are no officers, directors or key employees recorded for this organization
There are no highest paid employees recorded for this organization.
DIANN SHADDOX FOUNDATION
Board of directorsas of 01/27/2023
Board of directors data
Mr. Randy Miles
Randy Miles Executive Director Corporate and Pension fund consultant (Retired)
Term: 2014 -
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
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
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.
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.