Patient Newsletter: Winter 2023
TAF Launches Second Annual Kaleidoscope of Life Art Contest

The Assistance Fund (TAF) invites all current TAF patients to submit their artwork to the second annual Kaleidoscope of Life Art Contest for a chance to be featured on select TAF marketing and fundraising collateral. Eligible mediums include: paintings, drawings, and collages. Photography and sculpture are ineligible for this contest. 

Submitting your artwork is easy. Visit www.tafcares.org/art-contest and submit a high-resolution image of your artwork by Tuesday, February 28, at 11:59 p.m. ET. The five winning artists will be notified and announced by Friday, March 31, and will be mailed a TAF swag bag valued at $50 (limit one swag bag per entrant). 
A 2021 Art Contest Winning Submission
Jan Wigington, Director of Operations
Operations Team Tips: 2023 Reenrollment Concludes

My name is Jan Wigington, and I'm TAF's Director of Operations. Our 2023 Reenrollment cycle is now over and all acceptance letters have been sent. I hope you found this year's process efficient and user-friendly. This year, The Assistance Fund was proud to approve nearly 90% of the Reenrollment applications we received. Here are a few other notable statistics from this year's Reenrollment:

  • 27,866 Reenrollment applications received.
  • 27,037 contacts handled between The Assistance Fund (TAF) and our partners at Lighthouse Works (including online chats).
  • 5,113 online chats handled by Violet, TAF's new chatbot, enabling TAF to handle more calls and improve overall service levels.

As we look ahead to the coming months, a few reminders: 
  • If your disease program offers financial assistance with the cost of your health insurance premiums, your 2023 insurance plan information must be on file in order for your claims to be paid.
  • We conduct occasional financial or demographic audits, as required by our programs.
  • And all 2022 claims must be submitted by March 31, 2023.
Forbes Names TAF One of America's Top 100 Charities

The Assistance Fund was once again recognized by Forbes as one of America's Top 100 Charities. TAF also holds a perfect rating from Charity Navigator, a Platinum Seal of Transparency from Candid/GuideStar, and is a GreatNonprofits 2023 Top-rated Nonprofit. We're thankful to the providers, staff, generous donors, and you, the patients we serve, who have allowed us to assist nearly 180,000 people since 2009.
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 TAF patients are leading. Whether it's volunteering, playing music or pickleball, or participating in Bible study, each story is powerful.
Jeannette, a TAF Patient
Upcoming Disease Awareness Months
February:
American Heart Month
National Cancer Prevention Month

Rare Disease Week (February 28 – March 2)

Rheumatoid Awareness Day – February 2
World Cancer Day – February 4
International Epilepsy Day – February 13
National Donor Day – February 14
Rare Disease Day – February 28

March:
Amyloidosis
Bleeding disorders
Multiple sclerosis
Neuromyelitis optica spectrum disorder

International Women's Day – March 8
World Kidney Day – March 9
Certified Nurses Day – March 19
National Doctors' Day – March 30

April:
Fabry disease
National Minority Health Month
Oral, head, and neck cancer
Parkinson's disease
Primary immunodeficiency

Porphyria Awareness Week (April 1–8)

World Health Day – April 7
World Parkinson's Day – April 11
World Sarcoidosis Day – April 13
International Pompe Day – April 15
World Hemophilia Day – April 17
TAF staff wearing red for World Duchenne Awareness Day.
On the Road
Conference Attendance

In 2023, TAF will attend a wide range of conferences. Here's where we're headed next:

  • Fabry Support and Information Group Expert Fabry Conference, Orlando, FL (February 25–27)
  • EveryLife Foundation for Rare Diseases' Rare Disease Week on Capitol Hill, Washington, DC (February 28 – March 2)
  • Patient Assistance & Access Programs 2023 Conference, Philadelphia, PA (March 20–22)
Stephanie Marshall, Director of Patient Advocacy, and Mark Meier, Senior Manager of Communications, at the 2022 International Conference on Stigma at Howard University in Washington, DC.
TAF Partners With EveryLife Foundation To Strengthen Rare Disease Advocacy

TAF partners with organizations that share our commitment to improving patients’ access to critical treatment, including the EveryLife Foundation for Rare Diseases. As a proud 2023 sponsor of EveryLife’s Rare Giving Program, we affirm our commitment to elevating patients' voices by supporting this program that helps individual patients and organizations that engage in advocacy and public policy. We're also excited to meet patient advocates at EveryLife’s Rare Disease Week on Capitol Hill (February 28 – March 2). The events are free to attend. (Note: The deadline to register for Rare Disease Week is February 17.)
Advanced Research Projects Agency for Health Officially Established

At the end of 2022, Congress fully authorized the Advanced Research Projects Agency for Health (ARPA-H), officially establishing the new agency. Thank you, TAF advocates, for sending 655 messages last year urging Congress to authorize and fund ARPA-H with rare disease patients in mind. Our advocacy team will continue to work diligently to ensure patients' voices are prioritized by ARPA-H.

ARPA-H is a new agency created to accelerate scientific breakthroughs that prevent, detect, and treat diseases. TAF supported the creation of the new agency, which could transform the rare disease landscape.
We're Growing!

So far, TAF has added two new disease programs in 2023, bringing our total to 81. In January, we opened programs for people living with:

  • Acid Sphingomyelinase Deficiency
  • Hepatocellular Carcinoma
Purple Pro: Tempra Pope, Comptroller

What is your favorite part about your job?
I enjoy working alongside my colleagues. Each one brings their authentic self and corresponding talents to the table with such motivation. I show up every day to share the journey.

You’ve worked at TAF for 10 years. What have you learned?  
TAF has taught me to live a life of substance. After 10 years, my heart for assistance and giving has grown exponentially. You may not remember my every word or action, but I hope you will remember how it made you feel.

What three words best describe how to be successful at your job?
Commitment, learning, and teamwork.

How are you trying to improve patients’ experience?
I improve patients’ experience by treating my colleagues well through active listening, following up on commitments, and showing gratitude.

Describe what it’s like to work at TAF.
The workforce is diverse. The doors are open to questions and suggestions. And the minute you sign on, TAF is invested in you.

What is one fun fact about you?
I collect figurines of powerful women!

Which TAF value do you most identify with and why?
People. People are the heartbeat of every organization. When an organization’s mindset focuses on people, everything changes: productivity, morale, teamwork, and impact. 
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: Gayle, Breast Cancer Copay Assistance Program

Service has been Gayle’s life’s work. It is what drove her to serve as a health educator for the American Medical Association and to volunteer with the Peace Corps.

“I worked for two years in Togo in a little mountain village,” Gayle said. “I enjoyed it very much.”

It was in Togo when Gayle reconnected with her former boyfriend, Neil. The pair originally met studying abroad together in Europe, where they had romantic dates in the streets of Paris and the peaks of Switzerland. Gayle said Neil stood out among the other guys in her academic program.

“He told me I stood out, too, because I took notes,” Gayle said. “And I had the lightest luggage!”

That trip was the start of their 45-year journey together. Though Neil passed away in 2014 from complications related to Parkinson’s disease, Gayle treasures their many years and adventures together.

“It was just romantic and fun,” she said. “He was so different.”

At the end of 2017, Gayle faced her own health challenges when she was diagnosed with stage-four breast cancer. It was the third time she’d battled the disease, which runs in her family. 
“Because I was at stage four, the doctor said I better get my ducks in order because the potential for living longer than a year was not great,” Gayle said.

On top of the terrifying news, Gayle faced high out-of-pocket costs for the treatment she needed.

“It's around $12,000 for the first treatment, and then each month was $607, too,” Gayle said. “I was thinking I would be homeless.”

Gayle’s doctors referred her to The Assistance Fund’s (TAF’s) Breast Cancer Copay Assistance Program. The program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for breast cancer, such as copays, deductibles, and coinsurance. In minutes, her application was approved.

“The Assistance Fund came through,” she said. “It was very simple. I got my little card and my letter.”

Most importantly, the treatment has been effective. For four years, Gayle’s cancer has been under control.

“My doctor says I’m doing better than half of the other patients,” Gayle said. “It helps to know that I can continue my treatment, which has been remarkable.”

Gayle now spends her time with family in Evanston, Illinois. Her oldest daughter, Laura, and three grandchildren also live in the Chicagoland area. Without the financial burden of paying for treatment, Gayle said she is focused on doing what she can to help her grandkids afford college.

“TAF’s financial assistance relieves a tremendous amount of stress,” she said.
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 Communications Manager, at Mark.Meier@tafcares.org.
Happy Patients and Improved Health: The Healing Power of Philanthropy

Giving feels good—and there’s the research to back it up!

Clinical research provides compelling evidence that highlights the role of philanthropy in patients' lives. Expressions of gratitude—like those made by a thankful patient—have been linked to:
  • Increased ability to cope with stress
  • Stronger immune function
  • Quicker recovery from illness
  • Lower blood pressure
  • Increased feeling of connectedness, which improves relationships and wellbeing
  • Greater joy
  • Optimism
  • Increased generosity and compassion

Research also shows frequent charitable giving may protect patients from the onset of new health issues when faced with a new stressor. And charitable giving was shown to reduce the overall mortality rate in older adults by as much as 47 percent.

In a review article published by Harvard Health Publications, the authors put it succinctly: “Expressing thanks may be one of the simplest ways to feel better.”

Want to join in the fun and improve your own well-being? Our philanthropy team invites you to give what you can whether it be time, talent, or treasure to advance TAF’s mission. Here are some ideas to get you started:


Your philanthropic actions today make a life-changing difference for someone living with a life-threatening, chronic, or rare disease. Together, we can create an even more generous, kind, and supportive community for TAF patients and ensure no one goes without treatment because of an inability to pay.

Sources: Emmons (2010), Poulin et al. (2013), Okun et al. (2013), The Harvard Mental Health Letter (2011)
Healthy Recipe: Quick Tomato, White Bean, and Kale Soup

Makes: 4–6 servings
Time: 55 minutes

INGREDIENTS
  • 1 tablespoon extra virgin olive oil
  • 1 medium onion, chopped
  • 1 large carrot, chopped
  • 1 stick celery, chopped (optional)
  • Salt to taste
  • 2 large garlic cloves, minced
  • 1 14-ounce can chopped tomatoes, with juice
  • 6 cups water
  • 1 tablespoon tomato paste
  • 1 teaspoon oregano
  • 1 medium Yukon gold potato (about 6 ounces), diced
  • A bouquet garni made with a bay leaf, a couple of sprigs each parsley and thyme, and a Parmesan rind (optional – but it does add flavor; use what you have for this)
  • 1/2 pound of kale, stemmed, washed thoroughly, and chopped or cut into slivers (4 cups chopped)
  • 1 can white beans, drained and rinsed
  • Freshly ground pepper
  • Grated parmesan for serving

PREPARATION

  1. Heat the olive oil over medium heat in a large, heavy soup pot and add the onion, carrot, celery, and a pinch of salt. Cook, stirring often, until the vegetables are tender, about eight minutes. Add the garlic and cook, stirring, until fragrant, about 30 seconds. Stir in the tomatoes and juice from the can, add another pinch of salt, and cook, stirring often, for 5–10 minutes, until the tomatoes have cooked down slightly.
  2. Add the water, tomato paste, oregano, potato, and salt to taste. Bring to a boil, add the bouquet garni, cover, and simmer for 10–15 minutes until the potatoes are just about tender.
  3. Add the kale and simmer another 10 minutes, until the kale and potatoes are tender and the soup is fragrant. Taste, adjust salt, and add pepper. Stir in the beans and heat through for 5 minutes. Serve, sprinkling some parmesan over each bowl.

(Source: The New York Times)
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Headquarters:
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Washington, DC, Office:
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Washington, DC 20005
Hours: Monday–Friday, 8 a.m. – 7 p.m. ET