Donate"No one knows Essential Tremor better than those living with it.”
The Patient Council is a prestigious network of Essential Tremor Patients who serve as advisors to help inform and guide DSF.
The goal of DSF is to prioritize the patient voice in the fight against ET.
The Patient Council fosters discussions that influence research, policy, and more. We aim to ensure that scientists, policymakers, and society understand patient needs. Through activities like educational resources and outreach, we strengthen our ET community.
The Patient Council is aware of the realities of living with ET and works closely with DSF to ensure that the "patient voice" is always at the forefront.
The Patient Council advises DSF on strategies to increase clinical trial participation and efficiently collect patient data. Council members also play a key role in building strong relationships with industry, legislators, regulatory agencies, and innovative fundraising initiatives.
Our progress relies on uniting the ET Community and listening to their voices. All the research in the world is meaningless without hearing from the only people who can truly answer whether science is helping — those of us living with the disease.
The Diann Shaddox Foundation remains committed to being that link, directing strategic funding to projects that matter most to patients.
The goal of DSF is to prioritize the patient voice in the fight against ET.
The Patient Council fosters discussions that influence research, policy, and more. We aim to ensure that scientists, policymakers, and society understand patient needs. Through activities like educational resources and outreach, we strengthen our ET community.
The Patient Council is aware of the realities of living with ET and works closely with DSF to ensure that the "patient voice" is always at the forefront.
The Patient Council advises DSF on strategies to increase clinical trial participation and efficiently collect patient data. Council members also play a key role in building strong relationships with industry, legislators, regulatory agencies, and innovative fundraising initiatives.
Our progress relies on uniting the ET Community and listening to their voices. All the research in the world is meaningless without hearing from the only people who can truly answer whether science is helping — those of us living with the disease.
The Diann Shaddox Foundation remains committed to being that link, directing strategic funding to projects that matter most to patients.
Guidelines
We are committed to engaging individuals with ET as partners in all our initiatives. Responsibilities of council members may include, but are not limited to:
- You must be diagnosed with Essential Tremor
- Reviewing and providing feedback on programs, initiatives, policies, and materials that support the goals of the Team DSF.
- Offering insights into the unmet needs of the ET Patient community.
- Acting as ambassadors for the Foundation within the Essential Tremor community and the broader public.
- Identifying and facilitating opportunities to share the Foundation’s informational and educational resources.
- Supporting the Foundation by organizing local fundraising events in the community and/or contributing personally.
- Participating in Zoom meetings and attending one in-person meeting annually.
- You must be diagnosed with Essential Tremor
- Reviewing and providing feedback on programs, initiatives, policies, and materials that support the goals of the Team DSF.
- Offering insights into the unmet needs of the ET Patient community.
- Acting as ambassadors for the Foundation within the Essential Tremor community and the broader public.
- Identifying and facilitating opportunities to share the Foundation’s informational and educational resources.
- Supporting the Foundation by organizing local fundraising events in the community and/or contributing personally.
- Participating in Zoom meetings and attending one in-person meeting annually.
