Message From the President and CEO and the Board Chair
AtThe Assistance Fund (TAF), 2023 was a year of change and growth. When we took the helm in our respective positions of President and CEO and Board Chair, we knew it was critical to maintain our important work during a time of profound change in the healthcare industry. New factors like the rise of artificial intelligence and a rapidly changing healthcare policy landscape only make it more imperative for TAF to be creative and agile.
And we have remained committed to putting our patients front and center in everything we do. In 2023, TAF helped more than 40,000 children and adults access the treatment they need to stay healthy and manage a life-changing disease.
Among them are Andi, Ella, Tony, Billy, and Barbara, whose stories are featured in this report. Access to critical treatment allows Barbara to continue her travels and sightsee with her daughter. It lets Andi continue to paint masterpieces, including her winning submission to TAF’s 2023 patient art contest. And it gives Ella and her mom peace of mind as she heads back to school. With inflation and the cost of everyday goods continuing to rise, TAF financial assistance has never been more important. That’s why, through the generous support of our donors, since our founding, we’ve provided over $2 billion in financial assistance to more than 190,000 people living with a life-changing disease.
But there is more work to be done and we continue to increase the breadth of the support we provide. In 2023, we opened 10 new disease programs for people living with acid sphingomyelinase deficiency, activated phosphoinositide 3-kinase delta syndrome, biliary tract cancer, epidermolysis bullosa, hepatocellular carcinoma, idiopathic hypersomnia, immunoglobulin-A nephropathy, Rett syndrome, sickle cell disease, and small cell lung cancer.
Our impactful work continues to be recognized by leading charity-rating entities. In addition to awarding TAF a perfect four-star rating, Charity Navigator nominated TAF for its 2023 Community Choice Awards. With the support of the TAF family, we were named as one of three finalists in the Awards’ “super-sized” charities category. In addition, TAF:
• Was named in Forbes ’ “Top 100 Charities” list
• Was named by The NonProfit Times in its “Top 100 Charities” and “50 Best Nonprofits to Work For” lists
• Received a GuideStar Platinum Seal of Transparency
• Received a five-star rating from GreatNonprofits
Together, with the support of our donors, providers, caregivers, staff, and the people we serve, we are confident we will see the day when no person goes without treatment because of an inability to pay. Please enjoy the rest of this report.
JEFF MILFORD Chair, Board of Directors
DANIELLE VIZCAINO President and CEO
A MEDICAL ZEBRA
Andi, Primary Immunodeficiency Financial Assistance Program
“I want to give hope to young people.
Since she was a child, Andi has lived with unexplained illnesses and infections. One year, she missed nearly 30 days of school, but through it all, Andi tried to be like everyone else.
“I always had to try harder and work harder than others,” Andi said. “I was determined to keep up with the regular kids.”
And Andi went about her life, raising a family with her husband, Bob, in Washington state. Looking out to
unusual explanation—as well as the seemingly straightforward diagnosis.
Mount Rainier from a remote island, Andi could see eagles and whales while continuing to live without a diagnosis.
Despite her health issues, Andi worked twice as hard and did the best she could. It wasn’t until she was in her mid 60s, after losing 20 pounds unexpectedly, that her doctor believed something wasn’t right. Her bloodwork appeared normal, but Bob, too, suspected there was more to it.
“I was excited thinking my body is going to settle in a nice normal weight,” she said. “Bob was an advocate and pushed the doctors to figure out what was wrong with me.”
Two years went by with no answer; Andi got sicker and sicker. But Andi and Bob refused to give up. When she mentioned the similarities to her childhood sickness, her doctor immediately realized what was going on and referred her to an immunology specialist. It was primary immunodeficiency, a rare disease that prevents the body’s immune system from properly functioning.
“All the pieces of my life kind of fell together,” Andi said. “I was considered a medical zebra.”
The zebra is widely considered the mascot of the rare disease community based on a quote from Dr. Theodore Woodward: “When you hear hoofbeats, think horses, not zebras.” As the world has learned more about rare diseases, doctors now look for both the zebra—the
Andi’s doctors started her on an infusion treatment to reduce her symptoms and strengthen her immune system. Though Andi said she was relieved to finally have a diagnosis, the idea of regular infusion treatment left her uneasy.
“There was some anxiety with my treatment,” Andi said. “I lived 60 years without a diagnosis, but I know it will help.”
To help with the cost of her care, Andi applied to The Assistance Fund’s (TAF’s) Primary Immunodeficiency Financial Assistance Program. The program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved
treatment for the disease, such as copays, health insurance premiums, and other out-of-pocket expenses associated with treatment—including help with her infusions.
“I think TAF is amazing,” she said. “I have referred many people to TAF.”
To keep herself occupied, a friend recommended Andi take up painting. For over seven years, Andi has been creating art—pieces like her winning submission in TAF’s 2023 patient art contest. Her painting features a zebra alongside six white horses, each representing one of her five grandchildren along with her great-grandchild.
“I was inspired by Walter Crane’s painting of Neptune’s horses,” Andi said. “I want to give hope to young people.”
Andi’s artwork now hangs in her old neighborhood clubhouse in Arizona, where she and her husband were “snowbirds” for years. After nearly throwing it away when the couple returned full time to Washington state, her neighbors pleaded with Andi to keep it. Now, generations can recognize and appreciate its poignant beauty.
“I am the determined zebra,” she said.
“I was considered a medical zebra.
“TAF has allowed us to be freer about paying for a hotel or taking Ella out to eat.
MAKING MEMORIES
Ella, Lysosomal Acid Lipase Deficiency Financial Assistance Program
Author A.A. Milne’s
beloved character, Winnie the Pooh, once said, “We didn’t realize we were making memories, we just knew we were having fun.” Whether tubing off the back of her family’s boat or playing on her lacrosse team, Ella loves being active and having fun, her mom, Christa, says.
“She does archery and swimming,” Christa said. “She can play sports, run fast, and do anything you can do.”
With their summers off, Ella and her sister have grown up spending summers at their family's cottage on Lake George in upstate New York. In the fall, they return to their home in Amherst, Massachusetts.
“This summer she’s a mother’s helper,” Christa said. “She’s almost 12 and has tons of friends.”
Being a typical kid wasn’t always a given for Ella. The summer she turned eight, Ella started complaining of feeling full and being too tired to go to camp, which Christa said was unusual. Christa took Ella back to Amherst for a routine doctor’s appointment. When Ella woke up that night pointing to her side and complaining of pain, Christa was sure something was wrong.
“She was in so much distress,” Christa said. “They did extensive blood work and saw that her liver enzymes were elevated.”
Ella was transferred to a bigger hospital by ambulance. But after more testing, the medical team couldn’t figure out what was wrong and suggested it might be a virus. The family went months without concrete answers until Christa took Ella to be evaluated at Boston’s Children’s Hospital. Within hours, doctors there diagnosed Ella with lysosomal acid lipase deficiency (LALD), a chronic and progressive metabolic disease that prevents the body from metabolizing fats.
“It’s very rare,” Christa said. “We don’t know anyone in our family who has it.”
Christa was put in touch with another mother in Boston whose daughters are living with LALD. She told Christa about The Assistance Fund’s (TAF’s) Lysosomal Acid Lipase Deficiency Financial Assistance Program and how helpful it’s been to their family. The program provides financial assistance for out-of-
pocket costs for all prescribed FDAapproved treatment for the disease, such as copays, health insurance premiums, and other out-of-pocket expenses associated with treatment—like ground travel costs.
“There is a lot of traveling, and going in for liver scans is frightening,” Christa said. “TAF has allowed us to be freer about paying for a hotel or taking Ella out to eat.”
Initially, Ella needed to travel to Boston twice a month for her infusions. Now, she receives treatment at home.
“Ella is old enough now where she’s a little scared,” Christa said. “It’s stressful enough, so any assistance really means a lot.”
With Ella’s health stable, she can focus on what is most important—
“She’s very brave,” Christa said. “Thanks to this treatment, Ella is living a pretty normal life.
being a kid. This past summer, that meant spending time swimming, jumping off rocks into the lake, and enjoying time with her friends.
“She’s very brave,” Christa said. “Thanks to this treatment, Ella is living a pretty normal life.”
Ella and her friends
“Tony is just an anomaly; he just keeps on plugging away.
A STRONG HEART
High school sweethearts
Theresa and Tony have seen a lot in their nearly 50-year-long marriage: a new millennium, new technology, and so much more from their suburban Denver home. Through it all, the loving couple have always had each other.
“I’m still in awe that you can see a doctor over the phone!” Theresa said. “I’m still rising to The Jetsons.”
Tony first experienced heart issues when he was 16 years old. He faced challenges again just after he and Theresa were married in 1976, and later in 2016 when he went into cardiac arrest while coaching a softball game. After a defibrillator saved his life, Theresa was shocked when Tony hadn’t changed a bit.
“He woke up and wanted to know who won the game,” she said. “It was like normal.”
But surviving cardiac arrest wasn’t the end to Tony’s challenges. As he recovered and persevered, one of his kidneys failed, leaving him in the inten-
sive care unit for 32 days. With Theresa by his side, they were stunned when a doctor informed them Tony had been living for years with an undiagnosed rare disease, pulmonary hypertension (PH). The disease affects the blood vessels in the lungs.
“Doctors could not believe that he was still functioning,” Theresa said. “Tony is just an anomaly; he just keeps on plugging away.”
Tony’s doctors immediately prescribed him treatment to stabilize his condition, manage his pulmonary hypertension, and improve his lung health. To help with the cost of the care, they referred Tony to The Assistance Fund’s (TAF’s) Pulmonary Hypertension Copay Assistance Program. The disease program provides financial assistance for outof-pocket costs for prescribed FDAapproved treatment, such as copays, deductibles, and coinsurance.
“We never knew anything about TAF,” Theresa said. “They are just miracles.”
Within minutes, Tony was approved for assistance. Since beginning his treatment, Theresa said Tony has shown a remarkable turnaround and his lung numbers have returned “almost down to normal.”
“If I hadn’t had this medicine, I’d be dead by now,” Tony said. “TAF is really quite a blessing.”
Back on the move, Tony is exercising and attending his grandkids’ basketball games. The couple has four grandkids, all between the ages of five and 10, who live nearby. Most important, the kids get plenty more time with “Gee and Papa.”
“They’re our treat,” Theresa said. “They love their Papa.”
FULL OF LIFE
Billy, Prostate Cancer Copay Assistance Program
A native New Yorker with an accent to prove it, Billy, a self-described “people person” taught in the New York City school system his entire career. From kindergarten to 12th grade, American history to economics, Billy is a gifted speaker and a natural storyteller.
“I was the teacher that the kids loved most: I was mean but fair,” Billy said. “I taught almost every day of my life.”
During his summers, Billy ran a children’s camp in the Adirondack Mountains and, later, a hotel in the Poconos. When he retired, he and his first wife moved south to North Palm Beach, Florida, where he still resides today.
While living in Florida, Billy was diagnosed with prostate cancer and had a successful surgery that gave him a clean bill of health. He called that time in life “Camp Billy.”
To afford his critical treatment, Billy’s oncologists told him about The Assistance Fund’s (TAF’s) Prostate Cancer Copay Assistance Program. The program provides financial assistance for out-ofpocket costs for all FDA-approved treatment for prostate cancer, such as copays, deductibles, and coinsurance.
“All I did was play ball,” he said.
“I played softball. I refereed basketball games. I was full of life.”
But three years later, Billy found out his cancer had metastasized.
“It was hard to accept,” he said.
“But the way I’ve lived my life, if there’s trouble, I figure it out.”
While Billy underwent treatment, his wife started to notice something unusual happening with her eyes.
After being evaluated by specialists, she was diagnosed with large-cell lymphoma. Billy cared for her for a year until she passed away.
“It was a tough year,” Billy said.
But Billy credits the excellent care he’s received, and his treatment, for keeping him healthy through the worst days.
“The thing that’s most important to me is the treatment,” he said.
“It is working incredibly well to keep my bones strong.”
“But the way I’ve lived my life, if there’s trouble, I figure it out.
“The best thing about it is that TAF pays the copay on it,” he said. “It’s wonderful to know there’s somebody out there. It’s the most wonderful thing in the world.”
Ever a New Yorker, Billy believes in a “two-minute” rule when it comes to talking about his disease: You have two minutes to talk about what’s wrong and then must stop.
“Because all of us could talk forever about what’s wrong with us,” he said. “I’d rather talk about the Yankees.”
One evening after having a hip replaced, Billy was walking on the beach by his condo and exchanged smiles with a woman he passed. He saw her again two nights later and they started talking. Talking turned into love.
“I gave her a sheet of paper with seven reasons why she shouldn’t marry me,” Billy said. “We’ve been the happiest married couple ever since.”
Billy continues to do well with his treatment and says he is grateful for TAF’s assistance.
He gets up each morning, looks out the window over the ocean, and is ready for whatever comes next.
“I don’t know where I’m going to be tomorrow, but I’m going to enjoy today as much as I can,” Billy said.
“ We’re a happy couple of lovebirds,” Billy said of his second wife, Nancy.
“I’m grateful that I carry on traveling, even with primary biliary cholangitis.
STILL TRAVELING THE WORLD
Barbara, Primary Biliary Cholangitis
Financial Assistance Program
A world traveler once said, “The best thing about traveling is that you have disasters.” That world traveler is Barbara, and she has been nearly everywhere: Bali, Colombia, and beyond. Her most recent trips took her across California via the California Zephyr, to Quebec, and to the west coast of Costa Rica. Wherever she goes, Barbara refuses to let fear get in the way.
“You can do a lot of research, but you don’t know what’s going to happen in the world,” Barbara said. “You overcome the disasters and then say, ‘What a beautiful day it is. Let me go to the next place.’”
Barbara’s travels were recently featured on the PBS NewsHour in a segment on women traveling solo. Though she sometimes travels with her daughter or husband, Barbara said going alone is an entirely different experience.
“Travel has been really important to me,” she said. “There are life lessons for sure.”
When she is home and giving her suitcase a break, Barbara stays involved with her new community of New Castle, Delaware. Originally settled in the 17th century by Dutch immigrants, the small town is full of history.
“We are in one of the only buildings built in the 20th century,” Barbara said. “New Castle is completely historic.”
For 30 years, Barbara enjoyed a career in writing and film production in New York. She crisscrossed Manhattan, living in the Upper West Side, the West Village, and the Meatpacking District. But a few years ago, the cost of living—and winter weather—persuaded the couple to retire to Delaware.
“My husband didn’t want to shovel snow,” Barbara said.
Twenty years ago, when Barbara was still living in New York, blood work showed her liver enzyme levels were unusually high. It wasn’t until 2010 that a doctor at NYU Langone Health diagnosed her with primary biliary cholangitis (PBC), a rare liver disease. The news came as a shock.
“I didn’t know what was wrong with me,” she said. “I’m very healthy and try to keep active.”
Thankfully, Barbara connected with a vibrant online community for people living with PBC. The group shares the highs and lows, personal testimonials, and resources that provide financial assistance with PBC treatment costs.
In 2023, a community member suggested Barbara apply for The Assistance Fund’s Primary Biliary Cholangitis Financial Assistance Program, which provides financial assistance for copays, deductibles, health insurance premiums, and incidental medical expenses like travel costs.
“The medication is incredibly expensive,” Barbara said. “But it’s working for me, and I bless it every day.”
When the COVID pandemic hit, millions of jetsetters like Barbara were stuck at home, left to dream about trips they couldn’t take. It was during this time, just after she was laid off from her job, that Barbara began writing and blogging about her travels. With each new adventure, Babara attempts to capture the soul of each city in her writing.
“I don’t earn much money, but I started getting hired by online magazines and by travel companies that pay me in travel,” she said. “I’m grateful that I carry on traveling, even with primary biliary cholangitis.”
Read Barbara’s travel blog: https://thebabybloomer.blog /
“I’m very healthy and try to keep active.
MEASURING TAF’S IMPACT
Since 2009, The Assistance Fund has helped over 190,000 children and adults access the treatment they need to stay healthy or manage a life-changing disease. In 2023, we assisted more than 40,000 people in all 50 states, Washington, DC, and Puerto Rico through our nearly 90 disease programs.
Puerto
2023 IN NUMBERS 2023 FINANCIALS
Thanks to our generous donors, in 2023 TAF provided more than $298 million in financial assistance to patients living with life-changing diseases.
$303,891,651
94% of TAF expenditures provide direct financial assistance to patients States where we provided assistance: 50 (TAF also provides assistance to people in DC, Guam, the U.S. Virgin Islands, and Puerto Rico)
115,000 calls handled The average total assistance per patient was $7,295
40,070 patients assisted
of
WAYS TO GIVE
TAF offers several convenient ways for you or your loved ones to give. You can specify your gift go to one of our nearly 90 disease programs or give an unrestricted gift, which allows us to direct the monies toward the greatest need. Ninety-four cents of every dollar you give to TAF provides direct financial assistance to patients, and all gifts that go to The Assistance Fund are tax-deductible.
TAF CHAMPIONS PROGRAM
TAF’s Champions are our most committed donors. Through a monthly commitment, our Champions provide crucial, consistent funding so we can continue to help thousands of people who desperately need it. Learn more at https://tafcares.org/monthly-donors/
ONLINE
Go to www.tafcares.org/donate to donate directly through our website. You can also donate in honor or loving memory of someone.
PHONE
To donate over the phone, please call (855) 421-4610 to speak with someone from our Philanthropy Department.
Download, print, and complete the Giving Form from the “Other Ways to Give” page on the TAF website and mail it to: The Assistance Fund 8427 Southpark Circle, Suite 100, Orlando, FL 32819.
SOCIAL MEDIA
Donate to TAF through our Facebook page by clicking the “donate” button at www.facebook.com/assistancefund
START A FUNDRAISER
You can launch a pre-built, customizable fundraiser at https://giving.tafcares.org/-/XDSHZDMP or create a Facebook fundraiser by visiting https://ow.ly/KPPr50S16nC .
PLANNED GIVING
Leave a legacy and make a lasting impact by including The Assistance Fund in your estate plans. Visit https://tafcares.myplannedgift.org/ and choose the giving option that works best for your goals.
EMPLOYER MATCHING
Many employers offer a matching gift program and often match gifts from full- and part-time employees, retirees, and spouses. TAF’s employer matching gift program provides an easy way to increase the impact of your donation. Visit https://tafcares.org/donors/employer-matching/ to learn more.
LEADERSHIP
Executive Leadership
Danielle Vizcaino
President and CEO
Steve Alsene
Chief Financial Officer
Gerald Lauria
Chief Development Officer
John D’Angelo
Senior Vice President of Business Intelligence
Leena Patel Vice President of Business Development and Strategy
Jacqueline Pernier Senior Director of Compliance
Board of Directors
Jeff Milford, Chair
Justin Aronson, J.D. Vice Chair
Lawrence Hatch
Linda Howard
Julie Judge
Dan Klein
John Rushing
Medical Advisory Board
Robert Bermel, M.D.
Thomas Fountaine, M.D.
Brian Rini, M.D. FASCO
The Assistance Fund is a Better Business Bureau®-accredited charity and was in Forbes' Top 100 Charities for 2023.
