Form 990 for tax year 2022

Totals

Total revenue

$311,477

Total expenses

$343,041

Contributions and grants received

$307,428

Grants paid

$23,295

Program service revenue

$0

Investment income

$4,049

Other revenue

$0

Total assets, end of year

$476,347

Total liabilities, end of year

$0

Net assets or fund balances, end of year

$476,347

Program services expenses (Part IX)

$304,438

Management and general expenses

$32,477

Fundraising expenses

$6,126

Program service expenses (Part III)

$304,438

Program services were 88.7% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• PURPLE DAY (PD) PURPLE IS THE INTERNATIONALLY RECOGNIZED COLOR OF EPILEPSY. PURPLE DAY (PD) IS THE LARGEST GRASSROOTS INITIATIVE IN THE WORLD WHERE PEOPLE SHOW THEIR SUPPORT OF EPILEPSY AWARENESS BY WEARING PURPLE AND HOSTING AWARENESS AND FUNDRAISING EVENTS IN THEIR COMMUNITIES. AS THE GLOBAL SPONSOR OF PD, AKF MAINTAINS THE PD WEB SITE TO SHOWCASES ALL ACTIVITIES AND OFFER PEOPLE WITH EPILEPSY AND THEIR FAMILIES A WAY TO PARTICIPATE. THOUSANDS OF PEOPLE AROUND THE GLOBE IN OVER 130 COUNTRIES OBSERVE PD PROGRAM INITIATIVES INCLUDING ''THE GREAT PURPLE CUPCAKE PROJECT,'' WHERE BAKERIES AND ADVOCATES BAKE AND SELL PURPLE CUPCAKES TO RAISE FUNDS AND EPILEPSY AWARENESS. AKF SUPPORTS ADVOCATES WITH COLLATERAL EDUCATIONAL MATERIALS FOR THIS PROGRAM AND FOR EVENTS PD AMBASSADORS AND AKF ADVOCATES HOST EACH YEAR.WE HAVE EXPANDED THE PURPLE DAY CAMPAIGN WHICH WAS CELEBRATED ON MARCH 26TH, TO PURPLE DAY EVERY DAY, SO PEOPLE WITH EPILEPSY CAN HOLD A PURPLE DAY EVENT ANY TIME THEY WANT. IN ORDER TO SUPPORT THE PURPLE DAY EVERY DAY CAMPAIGN, WE HAVE BUILT A WEBSITE PURPLEDAYEVERYDAY.ORG. THIS CAMPAIGN HAS BEEN VERY WELL RECEIVED ALL OVER THE WORLD.

  Expenses $159,328 · Grants $4,341

• SEIZURE RECOGNITION AND FIRST AID TRAINING PROGRAM ONE OUT OF TEN PEOPLE WILL HAVE A SEIZURE IN THEIR LIFETIME. MOST PEOPLE DO NOT KNOW HOW TO HELP. OUR MISSION IS TO TEACH PEOPLE TO NOT FEAR PEOPLE WITH EPILEPSY. THUS OUR GOAL IS TO EDUCATE THE PUBLIC TO RECOGNIZE A SEIZURE AND TO BE ABLE TO PROVIDE APPROPRIATE FIRST AID WHEN THEY ENCOUNTER SUCH A SITUATION. IN FURTHERANCE OF THIS GOAL AKF PROVIDES FREE SEIZURE RECOGNITION MATERIAL AND FIRST AID MATERIAL AND TRAINING TO RESTAURANT AND HOTEL STAFF, TO MALL PERSONNEL AND RETAILERS, TO SCHOOLS AND PERSONNEL IN SPORTS ARENAS. WE UTILIZE SKYPE TO TRAIN INDIVIDUALS IN THE US AND AROUND THE WORLD TO UNDERSTAND EPILEPSY AND TO TRAIN OTHERS (TRAIN THE TRAINER). WE DEVELOPED "WOULD YOU KNOW WHAT TO DO IF I HAD A SEIZURE," INITIATIVE. THIS FEATURES PERSONS WITH EPILEPSY SHOWCASED ON POSTERS AND BOOKMARKS THAT INCLUDE SEIZURE FIRST AID INSTRUCTIONS. THEY ARE DISTRIBUTED FREE OF CHARGE THROUGHOUT THE WORLD.WE ALSO PROVIDE FREE EDUCATION TO 5TH GRADERS IN SCHOOLS ACROSS THE US. THIS EDUCATION HEIGHTENS SENSITIVITY TO PEERS WITH EPILEPSY WHILE DIMINISHING STIGMA, WITH THE HOPE OF ELIMINATING BULLYING. WE TRAIN EDUCATORS AND VOLUNTEERS TO PROVIDE THIS COURSE IN THEIR COMMUNITIES VASTLY INCREASING THE SCOPE OF THE PROGRAM. THE PROGRAM IS SCRIPTED BUT FLEXIBLE AND CAN BE MODIFIED TO MEET INDIVIDUAL CLASSROOM NEEDS. WE PROVIDE PROGRAM TRAINING, THE SUPPORT NEEDED INCLUDING MATERIALS TO DELIVER A PROFESSIONAL PRESENTATION. TO DATE, THE PROGRAM HAS EDUCATED ALMOST 100,000 STUDENTS. THE PROGRAM IS NOW OFFERED OUTSIDE OF THE US.

  Expenses $94,402 · Grants $11,455

• THE HEADS UP FOR VETS PROGRAM (HUV) HUV IS A COLLABORATIVE EFFORT BETWEEN THE ANITA KAUFMANN FOUNDATION (AKF) AND THE DEPARTMENT OF VETERANS AFFAIRS EPILEPSY CENTERS OF EXCELLENCE (ECOE).HUV SUPPORTS US VETERANS FROM ALL PREVIOUS AND CURRENT WARS THAT HAVE EXPERIENCED EXPOSURE TO IED (IMPROVISED EXPLOSIVE DEVICES) BLASTS AND OTHER EXPLOSIONS, LEAVING A PERCENTAGE WITH TRAUMATIC BRAIN INJURY (TBI) AND A RISK OF DEVELOPING POST-TRAUMATIC EPILEPSY AND SEIZURES. SOME SEIZURES ARE CONFUSED WITH SYMPTOMS OF POST-TRAUMATIC STRESS DISORDER (PTSD) AND OTHER ILLNESSES. THESE SEIZURES, ESPECIALLY THOSE THAT DO NOT PRESENT AS COMMONLY RECOGNIZED CONVULSIONS, MAY GO UNRECOGNIZED AS SEIZURES. THIS OFTEN LEADS TO AN INCORRECT DIAGNOSIS AND A LACK OF PROPER TREATMENT. IN ORDER TO IMPROVE SUPPORT FOR THESE VETERANS, THE VA ESTABLISHED 16 EPILEPSY CENTERS OF EXCELLENCE. OUR PROGRAM IS DESIGNED TO HELP ENSURE THAT CURRENT AND ACCURATE EPILEPSY INFORMATION IS DISSEMINATED TO VETERANS DISCHARGED FROM SERVICE. HUV PROVIDES THE FOLLOWING SUPPORT TO VETERANS AND THEIR FAMILIES: "FREE INFORMATION ABOUT EPILEPSY"FREE ASSISTANCE WITHIN THE VA TO RESOLVE BENEFIT DISPUTES REGARDING EPILEPSY AND SEIZURES"FREE SEIZURE RECOGNITION AND FIRST AID TRAININGS FOR INDIVIDUALS, EMPLOYERS, COMMUNITY GROUPS AND OTHER ORGANIZATIONS"FREE CONSULTATIONS AND LINKAGES TO RESOURCES FOR SOCIAL SUPPORT, EMPLOYMENT, TRANSPORTATION, ETC."OPPORTUNITIES TO CONNECT WITH AKF VETERAN ADVOCATES EXPERIENCING SIMILAR SITUATIONS"OPPORTUNITIES TO BECOME INVOLVED IN THE EPILEPSY COMMUNITY AS AN ADVOCATE, EDUCATOR OR VOLUNTEERHUV DISTRIBUTES THE FOLLOWING UNIQUE INFORMATIONAL SHEETS AND SEIZURE FIRST AID POSTERS AT NO COST TO US VETERANS, VETERAN ORGANIZATIONS AND THE GENERAL COMMUNITY AT LARGE UPON REQUEST:"SEIZURE RECOGNITION AND FIRST AID POSTER "SEIZURE RECOGNITION AND FIRST AID FLYER"TRAUMATIC BRAIN INJURY AND EPILEPSY FLYER"PSYCHOGENIC NON-EPILEPTIC SEIZURE (PNES) FLYERAKF HAS PROVIDED MORE THAN 45,000 HUV AND EPILEPSY INFORMATION PIECES TO INDIVIDUALS, ORGANIZATIONS, PUBLICATIONS, BLOGS, AND RADIO AND TV PROGRAMS THAT SUPPORT VETERANS AND THEIR FAMILIES. MANY HAVE LINKED HUV TO THEIR WEBSITES, OTHER SOCIAL MEDIA SITES AND HAVE INCLUDED OUR INFORMATION IN THEIR PUBLICATIONS AND DISTRIBUTED THEM DURING THEIR CONFERENCES. HUV CONTINUES TO SUPPORT COUNTLESS VETERANS, THEIR FAMILY MEMBERS AND CAREGIVERS WHO HAVE REACHED OUT TO US OVER THE PAST FOUR YEARS. IT IS IMPOSSIBLE TO MEASURE THE VETERAN CONNECTIONS WE HAVE MADE AS SOCIAL MEDIA DISTRIBUTES OUR PROGRAM INFORMATION DAILY. AND, MANY VETERANS, AS IN THE GENERAL POPULATION, UTILIZE OUR INFORMATION BUT WANT TO REMAIN ANONYMOUS, BECAUSE OF THE STIGMA ASSOCIATED WITH EPILEPSY. THE HUV PROGRAM DIRECTOR IS A MEMBER OF THE ECOE NATIONAL ADVISORY COMMITTEE, WHICH IS RESPONSIBLE FOR PROVIDING GUIDANCE, DIRECTION, AND OVERSIGHT OF ALL CLINICAL, EDUCATIONAL, AND RESEARCH ACTIVITIES WITHIN THE ECOE.

  Expenses $50,708 · Grants $7,500

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.

Grants on this return

• MCGUIRE RESEARCH INSTITUTE INC

  $7,500

  FUND RESEARCH FOR TRAUMATIC BRAIN INJURY FOR VETERANS

Provenance

Return type

form_990

Tax year

2022

Filed

15 November 2023

IRS schema version

2022v5.0

Source object

202313199349313026

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