THE ASSISTANCE FUND QUARTERLY NEWSLETTER | WINTER EDITION 2017 | PAGE 1

PRESIDENT’S MESSAGE:

GROWING OUR IMPACTWe hope you are enjoying the holiday season.

As the year closes, it’s a time for reflection at The Assistance Fund. In 2017, we experienced a lot of growth and change. We made significant progress in helping as many patients as possible afford the medicines they need and improving the experience of patients in their interactions with our programs.

This year, we added four new disease area funds, aided more than 30,000 patients and saw 20 percent growth in donations. We provided a total of $119 million in direct support to patients, helping them pay for their copays, coinsurance, premiums and incidental medical expenses.

SHARE YOUR STORYTell us your story! How has The Assistance Fund had an impact on your journey? We’d love to hear about your experiences managing your disease and its related medical expenses, and how TAF has helped. Your story could inspire others facing similar challenges. If you think you might want to share your experiences with TAF and how it has helped you, please visit http://tafcares.org/about-us/share-your-story.

TAF CARES

THE ASSISTANCE FUND QUARTERLY NEWSLETTER | WINTER EDITION 2017

SHOW YOUR SUPPORT FOR TAFIn 2017, thanks to your generous contributions, The Assistance Fund has provided more than 30,000 patients with financial assistance for their health-related expenses. This holiday season we are asking you once again for your support. Your contributions make it possible for us to work towards seeing a day when no one goes without medication due to an inability to pay. Together, we can make a BIG impact!

Visit tafcares.org/donate

Mark P. McGreevy President

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TAF IS ON FACEBOOK AND LINKEDINFollow us on Facebook! The Assistance Fund’s Facebook page keeps you in the loop on upcoming events, fundraisers and news that affect our community. You’ll find information on important topics like program enrollment and new fund openings, and helpful tips from our team. Visit Facebook.com/AssistanceFund. We also share updates on our LinkedIn page – search “The Assistance Fund.”

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NUMBER OF PATIENTS ASSISTED IN 2017 BY STATE

This growth in our impact was powered by growth in three areas: Leadership, Technology and Service Expansion.

• LEADERSHIP: As we’ve noted previously, we added several key senior leaders in 2017 who will help lead our organization into the future. Steve Alsene, our CFO, has already contributed significantly to improving our donation management operations, expediting the journey of money from our donors to patients. Danielle Vizcaino, our VP of operations, has been making changes in technology, operations and policies that help us better serve patients. We’ve also expanded our Board of Directors with the addition of Julie Judge, an HR leader who has held executive roles with Maxim Healthcare Services, Erickson Living, Cleveland Clinic and CitiGroup.

• TECHNOLOGY: This year we implemented several new systems to improve efficiency, assuring a faster and more seamless process for patients and sites of care to submit for and access our funds. Our in-house technology has migrated to a single world-class platform, which allows our staff to quickly access accurate patient records to more efficiently meet patient needs. We also implemented a new document upload system on our website, allowing patients to submit documents electronically to support reimbursement. We launched a new telephony system, which allows patients a host of self-service options and a “virtual hold” callback system.

• SERVICE EXPANSION: We’re also excited to announce the hiring of Christina Abbene as program manager, who is responsible for connecting directly with specialty pharmacies and sites of care to ensure efficient and timely access to TAF funds. Most of our patients receive reimbursements directly through sites of care, making the process of enrolling in one of our funds straightforward and seamless. We welcome Christina to the TAF family.

TAF wouldn’t be here without the generosity of our donors, and we’re proud to report that the number of donors to our funds continued to grow in 2017.

Personally, this has been an inspiring year to work at TAF, most notably when the team’s responsibilities extended beyond the office. At the US Hereditary Angioedema Association patient summit, as well as other summits, TAF staff were able to meet with patients and their families in person. Nothing is more rewarding than hearing from and meeting with the people who benefit from TAF’s work. Seeing their courage and the tremendous love from their families and caregivers – it’s why I get up in the morning.

I wish you and your families peace and joy this holiday season as we move toward an even brighter 2018 for TAF and everyone we’re privileged to serve.

Warmly,

Mark McGreevy, President

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PRESIDENT’S MESSAGE: GROWING OUR IMPACT

New Funds for 2017The Assistance Fund is

expanding! TAF manages more

than 30 disease funds, and has

added four new funds in 2017:

Gaucher Disease, Hunter

Syndrome, MPS VII – Sly

Syndrome and Myasthenia

Gravis. Our funds help

patients and families facing

high medical out-of-pocket

costs by providing financial

assistance for copayments,

coinsurance, deductibles and

other health-related expenses.

To date, TAF has helped more

than 30,000 people across

our programs!

THE ASSISTANCE FUND QUARTERLY NEWSLETTER | WINTER EDITION 2017 | PAGE 3

TAF CELEBRATES GIVING TUESDAY On Giving Tuesday, The Assistance Fund hosted a very special interactive event on its Facebook page focused on sharing information about TAF and the patients we help, and celebrating what we at TAF call “Purple Pride.” The day also honored the great work of TAF’s patient advocates.

“Giving Tuesday was a wonderful opportunity to engage and connect with the broader TAF commu-nity on social media, and to hear their stories,” said Brian Payne, director of development at TAF.

Throughout the day, TAF shared patient stories about the impact TAF has had on their lives. TAF’s patient advocates also had a chance to share what Purple Pride means to them.

“I love working at TAF. Every day I come to work and I get to work alongside one of the most dedicated and hardworking teams ever. That’s how I think about Purple Pride,” said Dianja Williams, a patient advocate.

Giving Tuesday is a global day of giving fueled by the power of social media. In the US, it is celebrated on the Tuesday following Thanksgiving, following “Black Friday” and “Cyber Monday,” to kick off the charitable season. This year, TAF increased its Giving Tuesday donations by 114% from 2016.

“We are always touched by the generosity of our donors. Thank you to everyone who donated,” said Payne.

Q&A: PURPLE PROSJodine Lee-Logan has been a patient advocate for TAF since 2015.

What is your favorite thing about the job?

I really enjoy reaching out to our newly enrolled patients to advise them of the funding that has been secured for them. Quite a few patients didn’t even know that TAF existed, and they express a lot of gratitude.

Has anything surprised you about working at TAF?

I am always surprised at the beginning of the year when we’re informed of how many patients we assisted the year before. The number is always growing!

What is an encouraging thing you often share with patients?

I encourage patients to keep fighting, and keep calling us. We’re often opening new funds and growing our funds, and we have dedicated employees who are working hard to secure more donations. So keep calling back!

Leave a Legacy:PLANNED GIVING TO TAF The Assistance Fund is now

accepting bequests. A bequest

is a gift made through your

will or trust and can include

gifts of stocks and bonds,

real estate, retirement assets,

cash or insurance. As with all

of the donations we receive,

making a bequest can help

The Assistance Fund to fulfill

our vision to see the day

when no person goes without

medication due to an inability

to pay.

Visit http://taflegacy.org/

or contact

renee.ebert@tafcares.org.

THE ASSISTANCE FUND QUARTERLY NEWSLETTER | WINTER EDITION 2017 | PAGE 4

How did you learn that you had MS?

I thought I might have had a stroke because I was dragging my leg, and I was having trouble walking. At first I thought that I injured my back from yardwork, but it wasn’t getting any better. I went in for testing, and they found out I had MS.

How did you pay for your medication before you began receiving assistance from TAF? How did you learn about TAF?

I had been paying for my medication through my husband’s insurance at work. When that changed and it became a catastrophic health insurance policy, I was able to get assistance directly from the pharmaceutical company. After some time, the company was no longer able to provide assistance to me, and they referred me on to TAF. They submitted my information to TAF, and TAF contacted me.

What does it mean to you to receive help from TAF?

It’s a godsend to me because I’ve seen a difference using the medication. I don’t fall, I don’t stumble and I have better quality of life being on the drug. I wouldn’t be able to be on it without TAF’s assistance. I consider it a blessing! I can’t even express my gratitude for it. We couldn’t do it, financially, without TAF’s assistance.

Why do you donate to TAF?

Prior to me getting assistance, I had to pay a $35 copay for my medication each month. Once I began receiving assistance, I put the $35 aside and donated it when I was able to. I thought if I could afford it back then, I should save it to donate and help someone else now.

Are there any tips you’d like to share with other patients?

MS takes away a lot of the abilities of people. Lots of the things I used to be able to do I can’t do anymore, so it’s important to find other ways to express myself and spend my time. Now I express my creativity by making greeting cards, and I really enjoy that. I’m working on my Christmas cards now.

TAF is proud to have provided financial assistance to more than 30,000 patients in need in 2017, and we’re inspired by your stories of strength and courage in the face of disease. This month, we spoke to Sherrilyn, a woman living in Troy, Michigan, who was diagnosed with multiple sclerosis (MS) in 1999.

Patient Profile

“My advice is – reach out! Express your needs if you’re having trouble. It never hurts to ask. We’re all used to hearing the word ‘no’ and we might not want to hear it but, you know what? You might hear a yes.”

THE ASSISTANCE FUND QUARTERLY NEWSLETTER | WINTER EDITION 2017 | PAGE 5

MEETING PATIENTS AND THEIR CAREGIVERS IN 2017

This year, TAF leaders and patient advocates headed to six destinations across the country to connect with patients, providers and advocates at conferences led by patient advocacy groups and other nonprofit organizations. These gatherings are an opportunity to share information and build community among patients and their families. TAF’s team met face-to-face with patients and shared information about TAF services. Here are some highlights:

When the US Hereditary Angioedema Association (HAEA) held their National Patient Summit in Bloomington, MN in September, TAF met with patients and answered questions about our financial assistance programs.

“We’re always excited to engage face-to-face with patients we’ve been helping, to hear their stories and to meet family and friends,” said Brian Payne, director of development at TAF. “In addition to connecting with patients, the HAEA conference and others like it provide a valuable arena for us to spread the word about our work. With a deeper understanding of patients’ experiences and needs, we can tailor our services and help even more people who are struggling to cover their out-of-pocket medical expenses.”

At the National Multiple Sclerosis Society “Impact Series 2017: Whatever it Takes” meeting in Orlando, FL this November, attendees met with TAF patient advocates. It was a welcome opportunity to hear from patients, answer questions and put faces to the names of patients with whom TAF has engaged over the phone or online.

“When patients see us on the road at these gatherings, we become a more visible part of their community of resources,” said Gerald Lauria, vice president of business development

TAF CONFERENCE ATTENDANCE, 2017

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APRIL 2017American Academy of Neurology, Boston, MA

MAY 2017 Consortium of Multiple Sclerosis Centers Annual Meeting, New Orleans, LA

JUNE 2017Parent Project Muscular Dystrophy (PPMD) Connect Conference, Chicago, IL

Planet Philanthropy, Tampa, FL

SEPT 2017Hereditary Angioedema Summit, Bloomington, MN

NOV 2017National Multiple Sclerosis Society Impact at Sea World, Orlando, FL

On the Road

“We’re always excited to engage face-to-face with patients we’ve been helping, to hear their stories and to meet family and friends.”

– Brian Payne, director of development at TAF

and strategic initiatives at The Assistance Fund. “The Multiple Sclerosis conference was focused on family and the community that surrounds the patient. That helps us extend our services. We’re able to have a dialogue with not just a patient or potential patient, but also their family members who often travel with them and, in some cases, assist them through the TAF enrollment process.”

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At the HAEA summit, attendees participated in technical events like meetings with immunologists to learn about the latest discoveries and advances in treating hereditary angioedema (HAE). Patients met with one another, too, finding commonality and socializing with those experiencing the same struggles and undergoing the same treatments.

“For many, conferences like these create a wonderful ‘family’ of individuals across the country who face similar obstacles,” Lauria said. “We’ve heard from many patients that they look forward to seeing each other at the conferences each year, reuniting and motivating themselves to continue the fight against their disease.”

HOW DISEASE ADVOCACY ORGANIZATIONS CAN HELP PATIENTS Realistically, we know it’s not always easy for individuals to attend conferences. Time, distance and health concerns can make attendance a challenge. But there are other ways to become involved in a community and find support. Advocacy groups for a disease area can point to local chapters or support groups that can provide helpful information and a sense of community.

For example, the National Multiple Sclerosis Society has numerous outlets that patients can participate in, from chapter meetings to MS Walk fundraisers. Many advocacy groups also host online discussion forums where patients can connect with others to share stories and offer support. HAEA, for example, offers its members a virtual “HAEA Café” to interact with a welcoming group of patients and their families.

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4700 Millenia Blvd., Suite 410

Orlando, Florida 32839

tafcares.org

WANT TO REACH US BY PHONE?

We’re available Monday through Friday at (855) 845-3663, 9am - 6pm EST, excluding holidays.

Our fax number is (866) 254-9411.

TAF attends the US Hereditary Angioedema Association National Patient Summit and the National Multiple Sclerosis Society’s “Impact Series 2017: Whatever it Takes” meeting.

TAF urges our patients to get involved! Reach out to the advocacy community for your condition and find out how you can participate, and how they may be able to provide support to you. See TAF’s patient resources page at tafcares.org/patients/patient-resources for a list of organizations offering in-person and virtual support.