PRESIDENT'S MESSAGE
Hello Friends,
It’s hard to believe that springtime is around the corner and we are already a quarter of the way through 2020. It has been an eventful time at The Assistance Fund, and I am excited to share updates with you.
First, I am pleased to announce that we were able to provide assistance to over 50,000 people living with life-threatening, chronic, and rare diseases in 2019. That brings the number of people we have helped in the past 10 years to over 100,000. And our reach is growing even more in 2020. In the past three months, we have opened seven new disease programs, bringing our total offering to nearly 70 different disease programs.
We also had the great honor of receiving top ratings from two additional charity-ranking websites: GreatNonprofits.org and ImpactMatters.org. In addition,
The Nonprofit Times,
a leading publication in the nonprofit sector, listed The Assistance Fund in its 2019 Top 100 Nonprofits list.
Finally, we are excited to have wrapped up our 2020 reenrollment period. This year, to better serve you, we implemented several enhancements to our reenrollment process, including reenrolling people in two groups organized by disease programs, creating an online reenrollment portal, and introducing a dedicated reenrollment phone number. I am proud to say that we were able to reenroll 94% of patients in 2020. Still, we always strive to improve, so please let us know if you have additional ideas on how we can make the reenrollment process as smooth as possible.
I hope you enjoy reading our additional updates below.
Sincerely,
Mark McGreevy
President and CEO
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TAF RECEIVES TOP RATINGS FROM THREE NATIONAL CHARITABLE RANKINGS
The Assistance Fund is proud to announce three incredible honors. Charity-rating websites GreatNonprofits.org and ImpactMatters.org included TAF in their top rankings, giving us five- star ratings. And
The Nonprofit Times
, a leading publication in the nonprofit sector, included TAF for the first time among its 2019 Top 100 Nonprofits list. Thank you to the donors, health care providers, and pharmacists who allowed us to serve more than 50,000 patients last year.
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COVID-19 CORONAVIRUS: WHAT YOU SHOULD KNOW
As you know, a newly identified coronavirus (COVID-19) has caused a recent outbreak of respiratory illness and is making international headlines. Symptoms include fever, a dry cough, shortness of breath, and muscle aches. Roughly 1,000 people in the U.S. have tested positive for COVID-19, with many
more cases worldwide
. According to the
Centers for Disease Control and Prevention (CDC), older adults and those with serious chronic medical conditions are at an increased risk for getting sick. Covering your cough with a tissue, washing your hands for at least 20 seconds, disinfecting surfaces, and avoiding touching your face are more important than ever. The CDC recommends having sufficient supplies of medications, tissues, and groceries in case you have to stay in your home for extended periods of time.
Recently, the CDC recommended that travelers defer any upcoming cruise ship travel for the time being. This is especially important for the elderly and people living with und
erlying health conditions. It is crucial to stay vigilant and prepared.
At TAF, we are monitoring the latest developments closely. For the most current information and directions on what to do if y
ou feel sick,
visit
the
CDC
website, and the websites for your state and local health officials.
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WE'RE GROWING!
TAF now offers nearly 70 disease programs, with seven new disease programs opened in 2020:
- Chronic granulomatous disease
- Cystinosis
- MPS Type 1
- Porphyria
- Pompe disease
- Thyroid eye disease
- Urea cycle disorders
View
a full listing of all of our programs.
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TAF JOINS IN CELEBRATING RARE DISEASE WEEK
Rare Disease Week 2020 was a success! All week, TAF staff (and their purple tote bags) were hard to miss around Washington, DC. Afterwards, we hosted a reception for patients and advocates in our new DC office. We are grateful for the time with so many friends and partners here in Washington, DC. See a few of our favorite photos below.
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ON THE ROAD
CONFERENCE ATTENDANCE
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Over the past few months, the TAF team participated in several conferences across the country, where we’ve enjoyed connecting with patients in person.
By attending these events, we are able to gain a better understanding of the challenges patients and families face, and spread the word about how TAF can help. Below is our 2020 conference schedule, which is subject to change. Please check the website for each conference for updates.
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WARMER WEATHER MEANS THE START OF ALLERGY SEASON
For people living with chronic medical conditions like asthma and autoimmune disorders, springtime means one thing: pollen.
Brilliant blue skies and birds chirping can distract from the harmful air particles that can make breathing, and just being outside, difficult. For many allergy sufferers, it’s tough to enjoy spring.
Depending on where you live, spring allergies can begin as early as February and last into the summer. As the temperatures rise, your local trees and plants begin releasing pollen.
Pollen, which falls from trees, grasses and some weeds, causes your body’s immune system to release histamine, the chemical behind your different allergy symptoms.
Know the Facts:
According to the
American College of Allergy, Asthma and Immunology
, more than 50 million Americans suffer from allergies each year. These symptoms can be irritating, like a runny nose or watery eyes, or extremely uncomfortable, like hives, rash, and difficulty breathing. For people living with chronic medical conditions, allergy symptoms can make asthma or other autoimmune disorders flare up. For this community, symptoms like fatigue, insomnia, inflammation and constipation are not uncommon.
Where you live plays a key role in whether you’ll experience symptoms this year.
The National Allergy Bureau (NAB)
specifies five nationwide regions for plants and trees and is a helpful resource for conditions in your state:
- Southeast – The most common allergens are Bermuda grass and oak and cedar trees. Cedar fever, as it’s sometimes called, comes from trees common in Texas, and blooms during spring.
- Southwest – Redtop grasses are a real nuisance from May to July. These grasses continue to cause allergies well into the fall.
- Northeast – Orchard, oak and pine tree allergies are the most common. Though they make for beautiful fall scenery, these trees can make spring difficult.
- Midwest – Brome, elder, and elm trees are common in this region. Elm trees cover much of the country, but windy conditions in the plains allow pollen from these trees to fill the air.
- West – Sweet vernal, iodine bush, and walnut trees frequent this region. Beginning in March, sweet vernal causes problems along the coast for many people (and your pets).
For those in Florida, Texas and Puerto Rico, spring allergies have already begun. If you’re living in the Northeast or Rocky Mountains, you’re probably still dealing with snow! But it won’t be long until you see pollen along your streets.
Make a Plan:
If you’re planning to spend extended time outdoors, don’t forget to check whether the air quality is safe. A simple walk around the block, or 15 minutes of gardening, can make you sick if you aren’t prepared. Long pants not only protect you from the sun but prevent rashes.
Medication, like corticosteroids, nasal sprays and antihistamines, can reduce your symptoms. Check with your doctor on the right allergy medication for you, as some have side effects that contribute to osteoporosis.
Local news organizations publish allergy forecasts alongside the weather segments. They can predict whether the leading causes of spring allergies, such as pollen, mold spores, and dust, will be at safe levels.
Visit websites like
weather.com
for more extensive forecasts on allergy levels in your region. Typically, the best time to go outdoors is after a rainstorm. And avoid windy days--that lovely breeze may be blowing pollen off the trees.
Sources:
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PURPLE PRO: CYNTHIA LOPEZ
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What is your favorite thing about your job?
My favorite part about working at TAF is being able to help others. It's so great to know that I can make the difference in someone's life.
What are some of the most common questions you receive?
Patients often ask whether they will be notified when a disease program opens and whether there are waiting lists for programs that aren't currently open. It's my job to be prepared and knowledgeable about each fund in order to help each unique patient.
Which three words best describe how to be successful at your job?
Team player, reliable, adaptable.
What have you learned while working at TAF?
I've learned that every day I can make a difference in the life of someone I've never met. By doing my best, I can help so many in need by getting them the medications and treatment that they depend on to survive.
How are you trying to improve the patient’s experience?
As a Patient Advocate, I try to show empathy with each person I speak with. If I can go the extra mile to help a patient, I will.
What's one fact people might not know about you?
I absolutely love the beach and watching the sunrise!
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GET THE LATEST NEWS FROM TAF
You don't want to miss TAF's updates and news! Be sure to add
info@tafcares.org
to your address book to receive our messages.
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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 world class patient experience.
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2020 REENROLLMENT CONCLUDES
This year, to better serve our patients, we reenrolled people in two grou
ps organized by disease program. We also introduced a dedicated reenrollment phone number and an online Reenrollment Portal to expedite the reenrollment process.
We are thrilled that we were able to reenroll 94% of patients this year.
Stay tuned for information on 2021 reenrollment. Visit our
website
, follow us on social media, and check your email inbox for important updates throughout the year.
A helpful reminder: Your 2020 insurance plan information
must
be on file before any claims are paid. Occasional financial or demographic audits may be conducted, as required by our programs.
We know that during this busy time it may have taken longer to reach us because of high call volume. We sincerely appreciate your patience. If you have ideas on how we can improve our reenrollment process, we want to hear them. Please reach out to one of our Patient Advocates by using the online chat feature on our website.
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PATIENT PROFILE:
MARY,
HEREDITARY ANGIOEDEMA
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Most mornings for Mary began the same way: She would wake up and begin the ritual of inspecting her hands and feet to determine which part of her would be immobile that day.
“Some days it would be, ‘I can’t use both of my hands,’” Mary says. “If I couldn’t use my hands, I would drive with my elbows. I got used to walking on my knees.”
Mary has lived with hereditary angioedema (HAE), a rare and sometimes life-threatening genetic condition, most of her life. HAE causes roving swelling in various parts of the body, including hands, feet, face and airway.
“HAE is a surprise disability, where there are days you go to bed not knowing how—or if—you’ll wake up in the morning,” Mary said.
Mary’s disease meant planning her life around a shorter-than-average life expectancy. She says she didn’t expect to live beyond 35.
“I would think every day about what I’d done with my life,” Mary says. “I didn’t put money in a retirement account because I didn’t expect to live that long.”
Mary built her life around her symptoms. People living with HAE often experience swelling in their skin, hands and feet, and a general tiredness and fatigue. For Mary, a self-described “active woman,” this was especially challenging. She was a frequent runner and enjoyed playing guitar in her free time. If she wanted to play guitar for 20 minutes one night, she’d have to plan on not being able to use her left hand the next day.
“There were days when everything was swollen, and I would be in bed for four or five days,” Mary says.
Years of clinical trials and wait lists meant Mary’s health and wellness were continually in flux. A new treatment significantly reduced Mary’s symptoms but she couldn’t afford it. Mary considered crowd-source fundraising but knew she couldn’t raise two weeks’ worth of the funds required for her treatment, let alone a full year.
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After learning about The Assistance Fund (TAF) from a support group member, Mary applied to TAF’s
Hereditary Angioedema (HAE) Financial Assistance Program
. Mary has received TAF assistance for her HAE treatment for the past three years and says her quality of life is vastly improved.
“It’s not just providing treatment to people for comfort, it’s quality of life and longevity of life,” Mary says. “Without TAF, I couldn’t afford it.”
Now Mary spends her free time running on her treadmill, playing guitar and piano, and performing at open mic nights in downtown Portland. As an active mom, she can be there for her 10-year-old daughter and family without stress or worry. Mary says that some days, she forgets she has HAE at all.
“I feel like I’ve hit the lottery,” Mary says. “I can never say thank you enough. There truly aren’t any words to just give the gift of a ‘normal’ life.”
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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 stor
y, please contact our TAF Communications Manager Mark Meier
at
Mark.Meier@tafcares.org
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HELP OTHERS
IN NEED
83 cents per day.
That’s all it takes to become a
Champion.
Join our monthly giving program today to help TAF assist even more people who are managing a life-threatening, rare, or chronic disease.
When you commit to
83 cents per day
($25 per month), you will receive a special gift from TAF as a thank you.
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SHARE YOUR TAF EXPERIENCE ON OUR GREATNONPROFITS.ORG PAGE
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Since 2009, we’ve helped over 100,000 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
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SPREADING THE VALENTINE'S DAY LOVE
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February was Blood Month, and the 14th was Donor Day. Our fantastic Patient Advocates took part by wearing red while celebrating Valentine's Day!
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4700 Millenia Blvd., Suite 410
Orlando, FL 32839
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