Fall 2024 Newsletter - The Assistance Fund

Patient Newsletter: Fall 2024

President's Message

Dear friends,

I hope your September is going well. In case you missed it, The Assistance Fund (TAF) recently released its 2023 Impact Report. This past year marked a period of change and growth for TAF as we continued to increase the breadth of the support we provide to people living with life-changing diseases. It's an honor to lead an organization that helped over 40,000 children and adults access critical treatment in 2023. A few of their inspiring stories are featured in the report.

A heartfelt thank you to everyone who cast their vote for TAF in Charity Navigator's Community Choice Awards this summer. Thanks to your support, we were named a finalist for the second year in a row! While we didn’t take home the top prize, being recognized again underscores the powerful impact we’re making together.

Finally, I want to share some exciting news about a new resource to assist you with expediting your reimbursements. This month, we launched a new webpage with detailed information about what information is required for each reimbursement document. The page now features clear guidelines and sample documentation to simplify the process. Your feedback has been invaluable in shaping these improvements, and we remain committed to making the reimbursement process as seamless as possible.

I invite you to read more TAF news and updates below. From all of us at The Assistance Fund, I hope you and your loved ones have a great fall season.

Sincerely,

Danielle Vizcaino

President and CEO

TAF's 2023 Impact Report

The Assistance Fund's 2023 Impact Report features the powerful stories of just a few of the children and adults we serve. Thanks to our generous donors, we continue to support tens of thousands of people access the treatment they need. 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's helping Ella grow up as a normal kid. And it lets Andi continue to paint masterpieces, including her winning submission to TAF’s 2023 patient art contest.

Read the Report

Important Reimbursement Updates

Ensuring patients receive timely reimbursements is a priority for The Assistance Fund. This fall, we are rolling out helpful enhancements and information to ensure a speedy, seamless process.

New "Reimbursement: What to Know" Webpage: We recently launched a new webpage detailing all the documentation required to ensure your reimbursements are processed as quickly as possible. To learn more, visit https://tafcares.org/patients/reimbursements/.

PNC Bank Direct Electronic Payment: As of Monday, September 23, 2024, TAF provides reimbursements by direct electronic payment. If you have a TAF-issued PNC Bank debit card, you may continue to use the card until Saturday, January 4, 2025; however, the card will be deactivated on Sunday, January 5, 2025. For more information, visit tafcares.org/pnc-bank.

TAF Named Finalist for Charity Navigator's Community Choice Awards

The Assistance Fund was thrilled to be named as a finalist for Charity Navigator's Community Choice Awards for the second year in a row. It was an honor to be named among so many impactful, influential nonprofits from around the country. Thanks to the support of thousands of TAF patients, our provider community, and the extended TAF family, TAF inclusion has increased awareness of our programs, allowing us to reach even more people in need.

Jan Wigington, Senior Director of Operations

Operations Update: Updating Contact Information

My name is Jan Wigington and I am TAF's Senior Director of Operations. All summer long, our team has been working to add additional resources to make the reimbursement process clearer and more efficient. In order to receive timely communications about reimbursement, reenrollment, and other news from TAF, it is critical we have your correct contact information.

The easiest way to update your contact information is through TAF's Patient Portal. TAF's Patient Portal allows you to update contact information, submit reimbursement requests, monitor the status of your requests, or download a new Member Card 24 hours a day, seven days a week. If you have not yet registered for the Portal, call us at (855) 845-3663 to begin the registration process.

Rare Diseases: Did You Know?

Did you know? About one-half of all rare diseases affect children. The Assistance Fund (TAF) is committed to supporting the rare disease community and more than half of our disease programs are rare disease programs.

This summer, TAF exhibited and presented at patient advocacy conferences for children, young adults, and families impacted by rare, and ultra-rare diseases to raise awareness of available financial resources. We were proud to be part of the International Rett Syndrome Foundation, Parent Project Muscular Dystrophy (PPMD), National Niemann-Pick Disease Foundation, and debra of America annual patient conferences. The opportunity to interact with so many children, young adults, parents, grandparents, and patient advocates is critical to our mission.

TAF is proud to partner with patient advocacy organizations to raise awareness of our disease programs, educate the community about financial assistance, and to learn more about the unique needs facing children and families impacted by rare disease so we can better support them.

TAF's President and CEO, Danielle Vizcaino, with an attendee at the 2024 PPMD Annual Conference

TAF's Director of Patient Advocacy, Stephanie Marshall, along with other members of the TAF team, volunteered at the 2024 PPMD Annual Conference

Read Stories About People Like You

At TAF, we know living with a life-changing disease can be physically and emotionally difficult. You are not alone. Every month, we share stories from people around the country in our Medium patient stories blog. These inspiring stories highlight the vibrant lives the people TAF serves are leading.

Mary, a TAF patient

Follow Our Patient Stories Blog

Share Your Story

Upcoming Disease Awareness Months

September:

Blood Cancer Awareness Month
Duchenne Muscular Dystrophy Awareness Month
ITP Awareness Month
Leukemia and Lymphoma Awareness Month
National Suicide Prevention Month
Ovarian Cancer Awareness Month
PBC Awareness Month
Prostate Cancer Awareness Month
Pulmonary Fibrosis Awareness Month
Sickle Cell Disease Awareness Month
Thyroid Cancer Awareness Month
Inflammatory Eye Disease Week — September 16–22
Duchenne Awareness Day — September 7
World PBC Day — September 10

October:

Breast Cancer Awareness Month
Eczema Awareness Month
Gaucher Disease Awareness Month
Liver Cancer Awareness Month

Niemann-Pick Awareness Month
Rett Syndrome Awareness Month
World Mental Health Day — October 10
World Psoriasis Day —October 29

November:

Alpha-1 Awareness Month
C.diff Awareness Month
COPD Awareness Month
Epilepsy Awareness Month
Family Caregivers Awareness Month
Lung Cancer Awareness Month
National Healthy Skin Month
Pancreatic Cancer Awareness Month
Pulmonary Hypertension Awareness Month
Stomach Cancer Awareness Month
World Acromegaly Awareness Day — November 1
NET Cancer Day — November 10
Iron Deficiency Day — November 26

On the Road

Conference Attendance

The Assistance Fund is attending a range of conferences in 2024. Here's where we're headed in the next quarter:

Global Genes Annual Summit, September 25–28

XLH Network Patient Day (presenting), October 11–13

Stephanie Marshall, Director of Patient Advocacy, and Mark Meier, Senior Manager of Communications, at the 2024 WORLDSymposium in San Diego, CA.

We're Growing!

So far, TAF has added seven new disease programs this year, bringing our total to 96. TAF now offers financial assistance for people living with:

Atopic dermatitis
COPD
Heart failure
Nonalcoholic steatohepatitis (NASH)
Neurofibromatosis
Post-traumatic stress disorder (PTSD)
Systemic sclerosis

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

Purple Pro: Shaukie Fenn, Patient Advocate

What is your favorite part about your job?

Connecting with patients and being able to meet their needs.

What have you learned while working at TAF?

I’ve learned to educate myself on the resources available for patients and how to be more empathetic. I’ve also learned how to teach patients to advocate for themselves.

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

Transparency, integrity, and being collaborative with my coworkers.

How are you trying to improve patients’ experience?

Clear communication, make sure patients understand the disease program, and treat them with respect.

Describe what it’s like to work at TAF.

It’s a humbling experience.

What is one fun fact about you?

I love hockey. Go Solar Bears!

Which TAF value do you most identify with and why?

Passion. I have a passion for helping those in need.

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: Tim, Amyloidosis Financial Assistance Program

Anyone who knows Tim would say he is a realist. As one of 13 siblings in a half-Irish, half-German family just outside Philadelphia, it’s the way he’s always been. A patient in The Assistance Fund’s (TAF’s) Amyloidosis Financial Assistance Program, Tim isn’t shy about sharing how he feels each day.

“I don’t want to paint a rosy picture,” he said. “I have lots of friends and family and when they ask, I tell them, ‘I am where I’m going to be.’”

Tim first started experiencing symptoms in 2011: tingling feet, changes in his fine motor skills, and severe gastrointestinal issues.

Every day, he felt like he was getting kicked in the stomach. For years, he carried on as best he could. After seeing 17 different specialists, Tim was left to decipher between several different potential diagnoses, like gastroesophageal reflux disease and issues with his gallbladder.

“It was a long process,” Tim said. “I thought to myself, ‘What is wrong with me?’”

When Tim woke up on Christmas Eve, 2019, he couldn’t take it anymore. He called his family doctor who recommended he see a cardiologist right away. Thankfully, Tim lived just miles from world-class doctors at the University of Pennsylvania, where he hoped he would get a definitive answer.

“Everybody seems to have a cardiologist,” he joked.

Because of the COVID-19 pandemic, Tim had to wait months to complete a range of tests.

But when the test results came back in September 2020, the doctor informed Tim that he had evidence of a previous heart attack, high levels of chronic health failure, as well as amyloidosis.

“I had no idea what he was talking about,” Tim said. “But it was a relief.”

To help with the cost of his care, Tim’s nurse told him about organizations that offered financial assistance for amyloidosis, like The Assistance Fund. TAF’s Amyloidosis Financial Assistance Program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for amyloidosis, including prescription drug copays, health insurance premiums, and incidental medical expenses.

“When I first got on my treatment, I saw the eye-popping copay,” he said. “Without TAF, I don’t know where I’d be.”

Because amyloidosis is genetic, Tim encouraged each of his siblings, and their extended families, to get genetically tested and see if they carry the gene linked to the disease. That testing has revealed many of Tim’s siblings are also living with amyloidosis.

“Two of my siblings were in denial,” Tim said. “I’ve learned to accept that I am what I am. I told them, ‘That’s crazy — if you know, you can get treated!’”

With access to his treatment, Tim’s condition has stabilized, giving him more time with his wife, friends, children, and large extended family in the area. Tim and his wife have eight grandkids between the ages of two to 17, and they’re often visiting — running all over the house making noise.

“They’re good kids,” Tim said. “I have a lot of bad days, but they’re helping me stay alive.”

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

Philanthropy Corner

Keep an eye on your mailbox for our latest message from Gerald Lauria, TAF's Chief Development Officer. We need your help to ensure no person goes without treatment because of an inability to pay. Please consider joining forces with TAF to help us expand our impact and help more patients! Last year, we served over 40,000 people, and we couldn't have done this without the generosity of our donors. Your participation is crucial to our mission. Thanks, in advance, for your support and involvement.

Donate Today

Summer Recipe: Eggplant Bolognese

Makes: 4 servings

Prep Time: 20 minutes

Cook Time: 55 minutes

INGREDIENTS

Salt and pepper
6 tbsp. extra-virgin olive oil
1 lb. Italian eggplant, peeled and chopped into ¼-inch pieces (4 packed cups)
6 oz. cremini (or white button) mushrooms, finely chopped (2 cups)
½ cup finely chopped white onion
½ cup finely chopped carrot
3 garlic cloves, minced
2 tbsp. tomato paste
3 cups mushroom broth (or vegetable stock)
1 cup canned whole tomatoes, crushed with your hands
1 tsp. dried oregano
1 basil sprig, plus chopped basil for garnishing
1 pound rigatoni, fusilli or other short pasta
2 tbsp. unsalted butter
Freshly grated Parmesan, for serving

PREPARATION

Step 1: Bring a large pot of salted water to a boil over high.

Step 2: In a large Dutch oven or other heavy-lidded pot, heat two tbsp. of the oil over medium-high. Add half of the eggplant, season with salt and pepper, and cook, stirring occasionally, until softened and lightly golden, 5 minutes. Transfer eggplant to a plate. Adjust heat to medium and repeat with two tbsp. of the oil and the remaining eggplant, transferring the eggplant to the plate.

Step 3: Add the remaining two tbsp. oil and the mushrooms to the pot. Season with salt and pepper and cook, stirring occasionally to scrape up any browned bits, until golden, five minutes. Add onion and carrot, season with salt and pepper, and cook, stirring occasionally, until onion is softened, three minutes. Adjust heat to low, add garlic and tomato paste, and stir until caramelized, about two minutes.

Step 4: Stir in broth, tomatoes, oregano, basil sprig, and the browned eggplant, then bring to a boil over medium-high. Cover, adjust heat to medium, and cook, stirring occasionally, until eggplant is very tender, 15 minutes. Uncover and cook, stirring and mashing half of the eggplant, until sauce is thickened, two minutes.

Step 5: While the sauce comes to a boil, drop pasta in the boiling water and cook according to package directions until al dente. Reserve one cup of the pasta water before draining.

Step 6: Add pasta, butter, and ½ cup of the pasta water to the eggplant mixture and cook, stirring vigorously, until pasta is nicely coated and mixture is saucy, two to three minutes. Season with salt and pepper.

Step 7: Divide pasta among bowls. Top with chopped basil and cheese; serve warm.

(Source: The New York Times)