International Autoimmune Encephalitis Society
Home for the AE Warrior
Programs and results
What we aim to solve
Increase visibility by networking with organizations and social media platforms that will assist us in our mission. Update our website with a new look and improve navigational tools so topics are located more easily.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
IAES Services
The International Autoimmune Encephalitis Society, (IAES), assists patients, family members and caregivers in all areas of their journey: locating expert physicians who have published in the field, and when necessary, assisting with appointments for fast and accurate diagnosis and treatment which leads to the best outcomes. We provide referrals for discounted ground and air travel and housing to make out-of-state travel to an expert possible. One on one support services offered are: Financial assistance advice that prevents a family’s bankruptcy or becoming financially destitute from out of pocket expenses due to a medical crisis. Education about medical insurance options that lead to the highest benefits including charity care, guidance on how to keep medical records and ensure best outcomes when faced with emergency health crisis including being placed on Psychiatric holds or commitment. We assist and educate
Where we work
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of people aware of Autoimmune Encephalitis
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
IAES Services
Type of Metric
Context - describing the issue we work on
Direction of Success
Increasing
Context Notes
Metrics from IAES website
Number of people aware of how Autoimmune Encephalitis is diagnosed and treated.
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
Tracked by website analytics. plus Followers on Public FaceBook Business page.
Number of Doctors with expertise in treating autoimmune encephalitis worldwide as reflected by their published research.
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
IAES Services
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
IAES Doctor's List reflects clinicians published in the field world wide who treat AE patients we have been able to locate thus far.
Number of people seeking educational and advocacy assistance for autoimmune encephalitis.
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
IAES Services
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
Membership in educational support group, inquiries for assistance IAES receives via, website, public FaceBook page, e-mail and telephone
Number of volunteer health care providers with IAES
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
IAES Services
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
Volunteers working directly with patients and family members through IAES services.
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?
Provide webinars with top AE experts around the world.
Become involved in clinical trials.
Participate in research around long-term cognitive outcomes for autoimmune encephalitis patients.
Publish a Handbook that guides patients and caregivers through their AE journey from what to know when the patient is in the hospital or first receives a diagnose through to rehabilitation and remission.
Publish a Children's book on AE.
Hold an International Awareness Event in another country other than U.S.A.
Increase our Medical Advisory Board.
What are the organization's key strategies for making this happen?
All above goals are currently being actively worked on or have been accomplished and added to.
What are the organization's capabilities for doing this?
We are currently looking for an artist illustrator for the children's book that has been written.
We are looking for a writer to assist us in completing the AE Handbook which has been outlined for content and research that will be included.
An International Event will take place in Mexico City March 26, 2022
IAES is currently involved in the first clinical trial for anti-NMDAr encephalitis
IAES will be partnering with Dr. Carsten Finke on a long-term cognitive outcome research project starting in Summer 2022.
What have they accomplished so far and what's next?
IAES is the only Family/Patient centered non-profit for autoimmune encephalitis. IAES owns and operates the most comprehensive website on the topic in the world. Doctors around the world are able to accurately diagnose their patients and confer with experts in the field for best treatment plans via our website.
IAES established the first educational support group for autoimmune encephalitis patients, caregivers and families. It remains the Gold Standard where other organizations are now beginning to follow our lead.
IAES provides one-on-one advocacy no other non-profit in the community provides: direction on accessing financial assistance and discounted medical bills in the USA, advocacy in hospital or medical bills being excused (one case save a family $42,000), overturning treatment denials (our model has been picked up by another non-profit in the community who received or assistance for their members and mentoring from us), Successfully increased awareness of autoimmune encephalitis via website, current social media platforms, outreach to doctors and medical centers, youtube presentations, personal presentations and brochures/literature, established AE Awareness Month in 2000 activities include an annual art show and awareness video that has achieved increased awareness of these disorders, AE Speaker Series with 5-7 experts conducting webinars throughout the month of February.
In 2000, IAES created the first product for autoimmune encephalitis in the world, AE Trivia playing cards, an educational and rehabilitation tool.
IAES has created easy Memes on AE topics that support patients, doctors, caregivers and families in education and advocacy needed to arrive at best outcomes and understanding of these disorders. IAES provides a community of support for patients and families known throughout the AE community at large by the name IAES christened it with: "AE Family" and also coined the tag title: "AE Warrior" in 2014 to educate the community about the difference in battling AE, an on-going disease vs viral, bacterial or toxic caused encephalitis a patient gets that is only active for a few weeks and then is no longer present.
IAES designed the Autoimmune Encephalitis Awareness Ribbon in 2015 which is registered as the international ribbon for AE. (Another organization does use a mimic of this ribbon with our approval).
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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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.
International Autoimmune Encephalitis Society
Board of directorsas of 03/19/2022
Tabitha Orth
International Autoimmune Encephalitis Society
Term: 2016 -
Daria Muir
Physician
Oksana Sweeney, CPA
Barbara Layt Vujaklija
RN
Tabitha Andrews Orth
Co-founder, IAES
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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 ? Yes -
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? Not applicable -
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
No data
Disability
Equity strategies
Last updated: 03/19/2022GuideStar 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 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 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 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 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.