Fall 2020 Newsletter - The Assistance Fund

President's Message

Hello Friends,

With the coronavirus disrupting our daily lives, it's been an unprecedented time for our country. At The Assistance Fund (TAF), we know that many of you may be experiencing even more acute challenges and we stand ready to continue serving you. Your health and the health of our staff remains our top priority.

Looking ahead, our 2021 Reenrollment period is just around the corner. Reenrollment will once again be organized into two groups: a "Purple Group" and a "Teal Group." Purple reenrollment takes place from November 2-19. Teal reenrollment takes place from December 1-18. Visit www.tafcares.org/reenroll to see which reenrollment group you are in. And be sure to check our website and social media accounts for important reenrollment updates.

Lastly, TAF released its 10-Year Impact Report this summer, which I am excited to share with you. Reflecting on the past 10 years, I feel a strong sense of pride in how much TAF has grown. None of our accomplishments would have been possible without the steadfast support of our donors, healthcare providers, our incredible team and -- of course -- you, the patients we serve. The report features touching testimonials we've received in patients' written letters, emails, and Facebook messages. Know that your kind words truly make our day.

We hope you enjoy our updates below.

Sincerely,

Mark McGreevy

President and CEO

Apply for TAF 2021 Reenrollment

Just like 2020, TAF reenrollment is organized into two groups that are disease-program-specific: Purple and Teal. Purple reenrollment takes place from November 2-19. Teal reenrollment takes place from December 1-18. When your reenrollment time period begins, you may apply for reenrollment through one of the following methods:

If we have your cell phone number on file, you will receive a text with your reenrollment link on your reenrollment date.
If we have your email on file, you will receive an email with your reenrollment link on your reenrollment date.
Visit: tafcares.org/reenroll, select your reenrollment group, select “Reenrollment Hub” on your group site, and enter your PIN.

If you wish to complete a paper application, please call 855-927-0898. Note: Applications will not be mailed or emailed prior to reenrollment dates, and must be requested. You must request a paper application once your reenrollment period has opened.

For more information, please visit our dedicated Reenrollment Page .

TAF Receives GuideStar Platinum Seal of Transparency

TAF is proud to announce that it has received a GuideStar Platinum Seal of Transparency. This, along with our top marks on charity-rating websites GreatNonprofits.org and ImpactMatters.org, and The Nonprofit Times' Top 100 list, places us among America's top nonprofits. We are thankful to our generous donors and healthcare providers for helping us serve more than 50,000 patients last year.

Operations Update: COVID-19

As of October 15, nearly 8 million Americans have tested positive for COVID-19. Our programs and services continue to be fully operational and, in April, we opened our COVID-19 Health Insurance Assistance Program for eligible individuals who have experienced a disruption in their health insurance coverage because of the pandemic. We know this has been a stressful time for you and your family. Our team is closely following public health guidelines as we transition back to our physical offices.

TAF Now Offers More Than 70 Disease Programs

Over the past few months, TAF has opened four new disease programs, bringing our total disease program offering to more than 70. Below are our four newest programs:

COVID-19 Health Insurance Assistance Program
Long-Chain Fatty Acid Oxidation Disorders Financial Assistance Program
Neurotrophic Keratitis Financial Assistance Program
Tumor-Induced Osteomalacia Financial Assistance Program

View a full listing of all of our programs.

10-Year Impact Report Highlights Accomplishments, Goals for Future

Our new 10-Year Impact Report features highlights from the past and present, lessons learned, and our goals for the future. TAF's growth and accomplishments would not have been possible without the steadfast support of our donors, healthcare providers, our incredible team, and of course, you, the patients we serve. Thank you.

Read the report here.

New TAF Values Initiative

This summer, TAF launched a new organization-wide values initiative. TAF's six core values — people, excellence, advocacy, passion, transparency, and innovation — are the fundamental reasons why we come to work each day.

These values are fundamental to our organizational culture and our commitment to each patient, provider, and donor who make up the TAF family. We look forward to sharing more about our values initiative with you in the future.

On The (Virtual) Road

Conference Attendance

Over the past few months, the TAF team participated in several virtual conferences, where we’ve connected with patients, providers, and patient advocacy groups.

By attending these events, we gain a better understanding of the challenges you and your families face, and spread the word about how TAF can help. Meeting patients' evolving needs remains a top focus as we continue to grow and assist more patients each year.

Here is our 2020 conference schedule, which is subject to change. Please check the respective conferences' websites for updates.

Purple Pro: Angelica Feliz, Quality Assurance Specialist

What is your favorite thing about your job?

I love that we all work in collaboration. We all believe in – and dedicate ourselves to – the mission of helping our patients.

What are some of the most common questions you receive?

I am often asked where our funding comes from, if we're a government program, and whether I enjoy working at TAF. I love sharing with our patients why I love coming to work every day.

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

Dedication, professionalism, and responsibility.

What have you learned while working at TAF?

There are so many things I've learned at TAF. The biggest is that there is no small job in a company; everyone’s role is important.

How are you trying to improve patients' experience?

I try to improve patients' experience by being an active listener, being empathetic, and keeping myself up to date with TAF’s procedures. If I know all the newest disease programs, our patients can be certain they're receiving the correct information and resources.

What's one fact people might not know about you?

I'm a proud mother of three with a bachelor's degree in psychology.

Pumpkin and Saffron Jasmine Rice Pilaf

Consider adding this tasty recipe to your fall meal list. Pumpkin and saffron have health benefits. Pumpkins are rich in vitamin A and contain antioxidants that may reduce the risk of chronic diseases. Saffron has components that may reduce blood pressure.

Ingredients

2 cups jasmine rice
6 cups (about 2 pounds) pumpkin or butternut squash, peeled, seeded and roughly chopped
2 tablespoons olive oil
3 cloves garlic, slivered
½ teaspoon saffron threads
½ teaspoon ground allspice
1 cup grated or minced Spanish onion
1 tablespoon kosher salt, or to taste

(Source: NYT Cooking)

Preparation

Rinse the rice, cover with cold water by at least 2 inches, and refrigerate overnight.
Place the pumpkin in a food processor with 1 1/2 cups water. Process until very smooth. Squeeze through a fine-meshed strainer over a bowl, pressing down on the solids to release the juice. Pour the liquid into a large measuring cup and add enough water to make 2 cups. (The pumpkin pulp may be used for another purpose, like soup.)
Heat the oven to 350 degrees. Drain the rice. Heat the olive oil, garlic, saffron, and allspice in a medium saucepan over medium heat. Add the onion and salt, and cook until the onions are translucent, about 3 minutes.
Add the rice and stir gently so as not to break the grains, coating it evenly with the aromatics. Cook until the rice is fragrant and lightly toasted, about 3 minutes. Add the pumpkin juice and stir for 30 seconds to prevent clumping. Cover and bring to a boil.
Transfer to the oven and cook until all the liquid has been absorbed, about 25 minutes. Remove, and keep covered in a warm place for 25 minutes. Uncover, fluff with a fork and serve.

Get the Latest News From TAF

Stay on top of TAF's latest updates and news! Be sure to add info@tafcares.org to your address book to receive our messages.

Follow The Assistance Fund on Facebook, Twitter, or Instagram for the latest news and updates, as well as a look at the people behind our best-in-class patient experience.

Use the hashtags #TAFCares and #YouHaveTAF to share your stories on how TAF has helped you.

Commitment To Innovation Continues With New Disease Program Waitlists, Upcoming Patient Portal

TAF is committed to innovation and providing seamless experiences for the patients we serve.

In July, we launched new disease program waitlists on our website. When new funding becomes available for disease programs not currently accepting new patients, TAF’s new disease program waitlists allow patients to enroll on a first-come, first-served basis.

To secure a place on the waitlist, patients must complete an enrollment application and meet program qualifications. When funding is available, TAF will send an invitation to patients on the waitlist. For more information, please read our waitlist Frequently Asked Questions.

Upcoming Disease Awareness Months

October

Breast Cancer

Gaucher Disease

HPP Awareness Week

World Psoriasis Day

November

Alpha-1

C. diff

Epilepsy

Gastric (Stomach) Cancer

Lung Cancer

NET Cancer Day

Pulmonary Hypertension

December

Crohn’s and Colitis Week

Infantile Spasms Awareness Week

January

Blood Donor

Thyroid

Patient Profile:

Emersyn,

Pulmonary Hypertension

Emersyn is not even two years old, yet she has already endured seven operations—four of which were open-heart surgeries—to repair a rare congenital heart condition. She has hypoplastic right heart syndrome, a rare heart defect that is caused by the underdevelopment of one side of the heart and affects an estimated one in 60,000 live births.

Emersyn’s parents were devastated when they learned more about their daughter’s diagnosis. At one point, a doctor told them prepare for Emersyn’s funeral.

Thankfully, Emersyn survived, but the costs of multiple hospitalizations, ongoing care, and expensive medications left the family in a difficult situation. Her mother, Abbey, quit her job to provide around-the-clock care for Emersyn and to take her to her doctor’s appointments in Chicago, 30 minutes from the family’s home in Dyer, Indiana. While Abbey’s husband provides the family with health insurance through his job as a garbage collector, their medical bills for Emersyn’s care were thousands of dollars, putting the entire family under significant financial strain. Insurance simply wasn’t enough.

“It was our cardiologist who told us about The Assistance Fund,” Abbey said. “We applied and were approved in 15 minutes. My husband and I cried when we found out.”

Emersyn's family say they are tremendously thankful for The Assistance Fund’s (TAF’s) Pulmonary Hypertension Financial Assistance Program, which provides financial assistance for copays, coinsurance, deductibles, and other medical expenses for children and adults living with pulmonary hypertension.

Thanks to this program, the $200 Emersyn's family spent every month on the four different medications Emersyn needed went down to zero.

“It’s amazing what you guys have going on,” said Abbey. “I’m part of TAF’s Facebook page and a support group for people with children dealing with this condition, which has about 700 followers. We try to get the word out.”

As a mom to two young children, Abbey still endures sleepless nights, but now with one less worry: she knows Emersyn’s care is covered and will continue without interruption. Abbey is up at 6 a.m. each day and has a full schedule. She must monitor Emersyn’s breathing to ensure she doesn’t get too active, make sure Emersyn’s takes her medications on time, and takes Emersyn to her checkups and her three-year-old son to hockey playdates.

“The day ends at about midnight, so I work off of five or six hours of sleep, but I do whatever I can for my kids and for my family,” Abbey said. “Having access and coverage is the best thing we’ve received.”

Advocate for Those Living With Life-Threatening, Chronic, and Rare Diseases

The Assistance Fund is committed to assisting patients in your disease community. As part of our commitment, we want to ensure that you have a voice when it comes to legislative matters that impact people living with life-threatening, chronic, and rare diseases. By becoming a TAF Advocate, we will let you know when there are opportunities to advocate on behalf of people living with life-threatening, chronic, and rare diseases. We will provide you with the tools to directly contact your member of Congress and key policy makers to share your perspective. To become a TAF Advocate, check the Advocacy Opt-In box during your Reenrollment.

Leave a Legacy and Save a Life Through Planned Giving.

Since 2009, The Assistance Fund has provided financial assistance to nearly 125,000 children and adults living with life-threatening, chronic, and rare diseases. This work would not have been possible without the immense generosity of our donors. Your planned gift will help ensure The Assistance Fund has the resources to continue supporting patients in the future. To learn more about leaving a legacy through planned giving, please contact Cheryl Sam, Director of Philanthropy, at (202)-660-447 7 or cheryl.sam@tafcares.org.

Share Your TAF Experience and Help More Access Critical Treatment

Since 2009, we’ve helped nearly 125,000 children and adults living with life-threatening, chronic, and rare diseases. If you've had a great experience with TAF, please take a few minutes to share your story on our GreatNonprofits page! By sharing your story, you will help us reach more people who are unable to access their critical medical treatment because of financial barriers. Share your story here: http://bit.ly/2Rk4DFQ.

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

Staying Safe, Serving You

TAF staff are committed to delivering the highest quality of service during the pandemic. Upon returning to the office in June and July, staff wore facial coverings and stayed physically distant. No matter what the challenges may be, we will continue to be here for you, helping you access the treatment you need.