Fall 2023 Newsletter - The Assistance Fund

Patient Newsletter: Fall 2023

President's Message

Hello there,

I hope your fall is off to a wonderful start. At The Assistance Fund (TAF), we've been hard at work, launching four new programs for people living with small cell lung cancer, biliary tract cancer, epidermolysis bullosa, and idiopathic hypersomnia, and preparing for our upcoming Reenrollment period. Details on Reenrollment were sent this week, so please check your email inboxes, as well as our website and social media accounts, for important information.

Last month, we launched our 2022 Impact Report, highlighting five of our patients who are living "beyond a diagnosis." I hope you’ll take a moment to read and enjoy their moving, inspirational stories. This year's theme is an important reminder that each of the people we serve is more than just a patient. You are parents, sons and daughters, siblings, friends, and community members from all across the country.

Thanks to everyone who voted for The Assistance Fund for Charity Navigator's 2023 Community Choice Award. The Charity Navigator Community Choice Awards were created to empower supporters to recognize and celebrate the exceptional work of top-rated charities. Even though TAF did not receive the final award, it was a tremendous honor to be considered and we are deeply grateful for your support.

Enjoy the rest of our news and updates below. I hope you and your families have a healthy and happy fall season.

Sincerely,

Danielle Vizcaino

TAF's 2022 Impact Report: Beyond a Diagnosis

Since 2009, The Assistance Fund has helped nearly 180,000 children and adults access the treatment they need to stay healthy or manage a life-threatening, chronic, or rare disease, including more than 40,000 just last year. While the numbers are impressive, each represents a person and family with a unique story. Our 2022 Impact Report, "Beyond a Diagnosis," highlights the stories of just a few of the people we serve and the different ways they’re staying active in their communities. We are so grateful to the TAF family and our generous donors who allow us to help so many people each year.

Read the Report

Jan Wigington, Senior Director of Operations

Operations Update: 2024 Reenrollment

My name is Jan Wigington and I'm the Senior Director of Operations. Once again, TAF Reenrollment will be organized into two groups: Purple and Teal. As 2024 Reenrollment approaches, I want to remind you to ensure we have your current contact information, including your email address, mailing address, and phone number. To update your contact information, visit our website or call us at (855) 845-3663. If you've moved in the past year, be sure to contact the USPS and give them your new address.

2024 TAF Reenrollment

Once again, TAF Reenrollment will be organized into two groups: Purple and Teal. To learn more about Reenrollment and see which group your disease program belongs to, visit our Reenrollment Webpage.

Purple Group: November 1 at 12 p.m. ET through November 17 at 7 p.m. ET
Teal Group: November 29 at 12 p.m. ET through December 15 at 7 p.m. ET

Learn About TAF Reenrollment

Read Stories About People Like You

At TAF, we know living with a life-threatening, chronic, or rare disease can be physically and emotionally difficult. You are not alone. Every month, we share the stories of people from around the country in our Medium patient stories blog. These inspiring stories highlight the vibrant lives the people TAF serves are leading. Whether it's volunteering, playing music or pickleball, or participating in Bible study, each story is powerful.

Follow Our Patient Stories Blog

Ben, a TAF Patient

Upcoming Disease Awareness Months

October:

ASMD Awareness Month
Breast Cancer Awareness Month
Gaucher Disease Awareness Month
Liver Cancer Awareness Month
Niemann-Pick Disease Awareness Month
Pancreatic Cancer Awareness Month
Rett Syndrome Awareness Month
World Mental Health Day - October 10
World Psoriasis Day - October 29
World HPP Day - October 30

November:

Alpha-1 Awareness Month
Epilepsy Awareness Month
Lung Cancer Awareness Month
National Family Caregivers Month
Pulmonary Hypertension Awareness Month
Stomach Cancer Awareness Month
Hyperoxaluria Awareness Week - November 7–12
Acromegaly Awareness Day - November 1
NET Cancer Day - November 10
Iron Deficiency Day - November 26

December:

Crohn's and Colitis Week - December 1–7
Infantile Spasms Awareness Week - December 1–7

TAF staff wearing red for Duchenne Action Month.

On the Road

Conference Attendance

In 2023, TAF will attend a wide range of conferences. Here's a glimpse of our fall schedule:

Global Genes Rare Health Equity Forum and Rare Advocacy Summit (September 18–21)
XLH Network Patient Day (September 22–23)
GBS/CIDP Annual Scientific Symposium (October 5–7)

Gerald Lauria, Chief Development Officer, and Mark Meier, Senior Manager of Communications, at the 2023 Healthcare Advocate Summit in New Orleans, LA.

The Inflation Reduction Act: What to Know

The Inflation Reduction Act of 2022 (IRA), signed into law by President Biden on August 16, 2022, includes several provisions to lower prescription drug costs for people with Medicare and reduce drug spending by the federal government.

TAF’s Executive Leadership team is closely monitoring ways the IRA may impact independent charitable patient assistance organizations. Last month, we established an IRA Strategy Working Group that is tasked with:

evaluating how the IRA will impact charitable patient assistance organizations;
developing a strategy and models to effectively navigate post-IRA implementation;
advising government agencies, like the Centers for Medicare and Medicaid Services, on how this law will impact charitable patient assistance the patients like TAF serve; and
identifying opportunities to educate the patients we serve, as well as the providers and donors we work with.

We're Growing!

So far, TAF has added four new disease programs this summer, bringing our total to 89. TAF now offers financial assistance for people living with:

Biliary Tract Cancer
Epidermolysis Bullosa
Idiopathic Hypersomnia
Small Cell Lung Cancer

Click Here To View a Full Listing of TAF's Programs

Purple Pro: Emily Friedman, Patient Relations Specialist

What is your favorite part about your job?

The best part of my job is when I can remove a burden or worry from a patient’s plate. There is no better feeling in the world.

What have you learned while working at TAF?

I've learned the importance of assisting every patient as if they were my own family member.

What three words best describe how to be successful at your job?

Kindness, detail-oriented, and patient-centric.

How are you trying to improve patients’ experience?

I try to give them all the information they need before they run into a bump in the road, and submit any suggestions they have on what would make the process better.

Describe what it’s like to work at TAF.

It's like a small family that has the ability to make a positive change in others’ lives.

What is one fun fact about you?

I used to be a professional singer.

Which TAF value do you most identify with and why?

Passion and people. I am passionate about helping people. I feel this has always been my calling.

TAF Is on Instagram

If you're on Instagram, follow @TheAssistanceFund for the latest news and updates, as well as a look at the people behind our best-in-class patient experience.

Patient Profile: Carol, Primary Biliary Cholangitis Financial Assistance Program

The songwriter John Denver once wrote that Colorado was the place, “Where the sky looks like a pearl after a rain.” And since Carol has lived in Colorado with her family, she’s seen that pearl regularly.

“It’s best to just enjoy every day,” Carol said. “You don’t know what tomorrow will bring.”

After several years as a stay-at-home mom, Carol worked for years as a grant specialist at the University of Colorado, Boulder, near her home in Denver. Though she’s now retired, Carol misses the camaraderie of her team.

“I miss working, I really do,” she said. “I don’t feel old in my mind. Not at all!”

Carol is surrounded by friends and family in the Denver metro area, as well as her adult son, who lives with her.

“Together, we can do OK,” Carol said. “The mountains here are wonderful, and it is beautiful when the Aspen trees turn.”

It wasn’t until Carol was in the hospital managing a separate diagnosis that she learned her liver enzyme numbers were abnormally high. When tests confirmed she had a chronic liver disease called primary biliary cholangitis (PBC), she was stunned.

“I remember thinking, ‘I’ve been a vegetarian for decades and I don’t drink. How could I have this?’” Carol said.

People living with PBC have difficulty with digestion and the removal of bile from the liver. Treatment is necessary to slow down the damage to the liver.

“I had all kinds of questions,” Carol said. “I had to research and read and read some more.”

Carol’s career left her with some savings, but most of her limited monthly income goes to her home and living expenses. Carol was stunned to see how much her treatment could cost.

“One of the treatments for PBC costs $9,000 a month,” she said. “I was so, so worried,”

Her hepatologist at UCHealth referred her to The Assistance Fund’s (TAF’s) Primary Biliary Cholangitis Financial Assistance Program. The program provides assistance for copays, deductibles, premiums, and ground travel costs.

“The application was so easy to fill out,” Carol said. “Whenever I call, everyone is just so nice and patient.”

Since receiving treatment, Carol’s health has dramatically improved, and her bloodwork has returned to normal. Now Carol is focused on what matters most: her health and caring for her son, who recently started a new job.

“I’m very, very grateful to TAF,” she said. “The whole organization is wonderful. This could have never happened without their help.”

Would you like to be featured in an upcoming newsletter? If you have received assistance from TAF and are willing to share your story, please contact Mark Meier, Senior Manager of Communications, at Mark.Meier@tafcares.org.

Philanthropy Update: Giving During the New School Year

Autumn marks the transition to the new academic year. We know this season can be incredibly challenging for parents as they face financial burdens in providing children with the tools they need to succeed in school. As you consider school fundraisers, please also consider donating to TAF to support the critical healthcare needs of children living with life-threatening, chronic, and rare diseases. Here are some giving reminders:

Assess your finances: Before making donations, look at your financial situation to see how much you can afford to give. Consider your income, expenses, and financial goals for the year.
Research your cause: Visit tafcares.org for more information or to read the latest news about TAF.
Set a budget: Establish a budget for your charitable giving to ensure you don’t overextend your finances.
Research tax deductions: In the U.S., donations to qualified nonprofit organizations can be tax-deductible but there are certain restrictions and documentation requirements. Visit irs.gov to learn more.
Make a donation: Once you’ve decided on a gift amount, you can donate online or by sending a check to The Assistance Fund, 8427 Southpark Circle, Suite 100, Orlando, FL 32819.
Gift in honor or memory: Consider donating in honor of someone special or in memory of a loved one. TAF offers options to dedicate your gift, and this can be a meaningful way to remember and celebrate loved ones.
Keep records: Maintain records of all your charitable donations, including receipts and acknowledgments from TAF. Proper documentation is essential when claiming tax deductions.
Consult a tax professional: If you have questions about the tax implications of your donations, or if you want to maximize your deductions, it’s a good idea to consult a tax professional or accountant.
Share your giving spirit: Encourage others to join in the season of giving by sharing your charitable efforts on social media or with your friends and family.

The spirit of giving is about making a positive impact on your community. While tax deductions can be a valuable incentive, the true reward is the difference you make in the lives of others. Last year, the TAF community of donors provided more than 40,000 people with more than $253 million in financial assistance. Help us expand our support to people in need—and ensure every child and adult has the ability to access the treatment they need, regardless of their ability to pay.

Donate Today

Fall Recipe: Pumpkin Cream Cheese Muffins

Makes: 12 muffins

Time: 45 minutes

INGREDIENTS

STREUSEL

2 tablespoons all-purpose flour
2 tablespoons light brown sugar
1/2 teaspoon cinnamon
Pinch of kosher salt
1 tablespoon unsalted butter, cold and cut into cubes

MUFFINS

1/2 cup unsalted butter, melted
1 cup light brown sugar
2 large eggs
1.5 cups pumpkin purée from 1 (15-ounce) can
2 teaspoons cinnamon
1 teaspoon ground ginger
1/2 teaspoon ground nutmeg
1/4 teaspoon ground allspice
3/4 teaspoon kosher salt
2 cups all-purpose flour
2 teaspoon baking powder
1/2 teaspoon baking soda
1/2 cup cream cheese, cold

PREPARATION

Place a rack in the center of the oven and heat oven to 350 degrees. Line a 12-cup standard muffin tin with paper liners.
Make the streusel: In a small bowl, combine the flour, sugar, cinnamon, and salt. Add the butter, then pinch the butter into the flour mixture with your fingertips until the mixture looks sandy with small crumbs and is evenly moistened.
Make the muffins: In a large bowl combine the butter and sugar, and whisk to combine. Add the eggs, and mix until emulsified. Add the pumpkin purée, cinnamon, ginger, nutmeg, allspice, and salt. Whisk until combined and smooth.
Add the flour, baking powder, and baking soda, and use a rubber spatula to stir until almost combined—a streak or two of flour is OK. Use your fingers to break up the cream cheese into roughly teaspoon-size bits, and sprinkle them onto the batter.
Fold in the cream cheese until evenly distributed and no streaks of flour remain. Divide the mixture among the 12 liners; they will be almost full to the top. Divide the streusel over the tops of the muffins, if using.
Bake the muffins until puffed and golden, and a toothpick inserted into the center comes out clean, 19 to 23 minutes. Store leftover muffins in the refrigerator in an airtight container, and warm slightly before serving.