NTD Awareness Week 2016: A Global Celebration of Progress in the Fight Against NTDs

END7 student supporters have had a busy spring! Between creative fundraising events, high-impact advocacy activities (including meetings with 39 members of Congress on the second annual END7 Student Advocacy Day!), and the launch of chapters at universities from Scotland to Ghana, our student community has been making a difference in communities around the world. Students kicked off this busy semester with the celebration of the first-ever global NTD Awareness Week from January 24-30 – ending on the fourth anniversary of the signing of the London Declaration on NTDs.

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Here are some highlights from the week from participating universities around the world:

Duke University (Durham, North Carolina, USA)

Duke University END7 Student Advisory Board representative John Lu is currently teaching a for-credit elective course on NTDs, and celebrated NTD Awareness Week on campus by inviting Justin Lana, a PhD candidate at Duke, to give a guest presentation on guinea worm to the class. Justin spent two years living in a tent in South Sudan working with the Carter Center on their Guinea worm eradication effort. He shared stories of his work while living there, and demonstrated to the class how exactly he, and those he supervised, went about from community to community to ensure that guinea worm transmission was interrupted. He even brought in a few of the actual water filters that were distributed to community members to stop transmission, and passed around a guinea worm in formaldehyde that he had smuggled into the U.S. The sample is one of just 300 remaining samples of guinea worm, which is nearing eradication (with just 22 human cases left in the world).

Georgetown University (Washington, D.C., USA)

Throughout NTD Awareness Week, Georgetown students actively promoted a petition to urge President Obama to increase funding for the USAID NTD Program in the last budget request of his presidency. END7 at Georgetown members helped deliver petition signatures across town to the White House at the end of Awareness Week!

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Glasgow University (Glasgow, Scotland)

To celebrate NTD Awareness Week, the newly-established GUEND7 Society organized a pub quiz trivia event that raised £177.05 ($250) for END7! 30 attendees had a great time answering trivia questions about NTDs and other topics. The winning team was awarded a prize of tea cakes and biscuits donated by a local merchant.

Glasgow University pub quiz winning prize

Northeastern University (Boston, Massachusetts, USA)

END7 at Northeastern celebrated NTD Awareness Week with a Dancing with the Stars fundraising event, bringing campus celebrities together with members of the Northeastern University Ballroom Dance Team to put on fun performances – and even offer a Bachata dance lesson to attendees!

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This creative event raised hundreds of dollars for NTD treatment – and was a whole lot of fun!

Nnamdi Azikiwe University (Awka, Nigeria)

Nnamdi Azikiwe University END7 Students Awareness Forum - NAUTH

Students at Nnamdi Azikiwe University, Awka, organized a training session for medical students to learn more about NTDs. The president of the Nnamdi Azikiwe University, Awka Medical Student Association (NAUMSA), John Chukwu, recorded this video explaining NTDs and the END7 campaign and rallying students to get involved in the NTD effort.

Watch the video
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Rice University (Houston, Texas, USA)

END7 at Rice launched NTD Awareness Week with a Super Smash Bros video game tournament that brought students from across campus together to raise money to “smash NTDs” while competing to win their favorite game.

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After a busy week of advocacy and education activities on campus, they collaborated with the Rice Pre-Medical Society to make NTDs the topic of their Third Annual Medical Speakers Conference on January 30. Dr. Peter Hotez, president of the Sabin Vaccine Institute (home of END7), delivered the keynote address, “NTDs: The Global Diseases of War and Poverty” – and took a minute to pose with members of the END7 at Rice executive board at the event.

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Saint Mary’s University (Halifax, Canada)

Members of the just-launched SMU Voice for NTDs student society celebrated NTD Awareness Week with a fun Tropical Night fundraiser to spread the word about their new club and raise money for NTD treatment. The event featured a limbo competition, tropical photo booth, costume contest, and tropical refreshments – a perfect escape from the Halifax winter weather!

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Talk about putting the fun in fundraising!

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University of Sierra Leone (Freetown, Sierra Leone)

The leaders of END7 at the University of Sierra Leone College of Medicine and Allied Health Sciences (COMAHS) organized several exciting events during NTD Awareness Week, beginning with a capacity building training for students to learn about the NTDs prevalent in Sierra Leone. The training was co-facilitated by Hellen Keller International, an NGO addressing NTDs in the country. END7 at USL president Ishmael Tamba Jalloh gave a presentation about END7 and NTD Awareness Week at the event.

USL training

Ishmael then appeared on the Sierra Leone Broadcasting Cooperation national television program, PODIUM, to raise awareness about NTDs and END7, and was interviewed on two radio stations to promote NTD Awareness Week. Listen to his interview on the “Good Morning Show” here.

USL Ishmael radio interview

In addition to educating students and citizens about NTDs, END7 at USL members got involved directly in the NTD control and elimination effort by visiting schools in a low-income area of Freetown to educate primary school students about the importance of washing their hands and participating in mass drug administration (MDA) campaigns to stay safe from NTDs.

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They also brought a water purification device to the school they visited to drive home their message!

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END7 at USL members celebrate a successful NTD Awareness Week by holding up 7 fingers for END7!

USL members

University of Texas at Austin (Austin, Texas, USA)

END7 at UT kicked off NTD Awareness Week by setting up a Bagels and Brochures table in a busy area of campus, handing out information about NTDs and pastries donated by a local Panera restaurant.

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Club members also wrote dozens of letters to President Obama urging him to increase funding for the USAID NTD Program in the last budget request of his presidency – mailing them to D.C. just in time for our petition delivery at the White House!

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We are so proud of END7 student supporters around the world who came together to raise awareness and funds to fight NTDs during the first-ever global NTD Awareness Week. The diversity of our student supporters and the events they organized is a testament to the global nature of the NTD control and elimination effort – and the power of partnership in fighting NTDs. Here’s to making NTD Awareness Week bigger and better in 2017!

My First Advocacy Experience – But Not My Last

The END7 campaign awarded scholarships to three outstanding student leaders to attend the second annual END7 Student Advocacy Day in Washington, D.C. Read scholarship winner Tayler McCord’s reflection on her experience in D.C.:

By Tayler McCord, Michigan State University

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Tayler (second from right) after her group’s first meeting of the day in the office of Senator Elizabeth Warren of Massachusetts.

My involvement with neglected tropical disease (NTD) advocacy and fundraising began only a few months ago when I cofounded an END7 chapter at Michigan State University along with seven other undergraduate students. We each had an interest in public health and saw the importance of getting involved with NTDs. Prior to starting a chapter of END7, my knowledge of these diseases was very limited and I was not aware of the devastating burden of NTDs on global health. As I became more involved with END7 at MSU, I felt even more determined to raise awareness and funding to help eliminate these devastating yet preventable diseases. When I received an invitation from the Global Network for Neglected Tropical Diseases to attend the second annual END7 Student Advocacy Day on March 1 in Washington, D.C., I was ecstatic. I knew that this event would be an incredible opportunity to be involved, firsthand, in the process of advocating for an issue that I had become very passionate about over the past year.

NTDs are a group of diseases that affect one in six individuals worldwide. Not only do they cause disability and disfigurement, NTDs also perpetuate a cycle of poverty by preventing children from attending school and receiving an education, by preventing adults from working and earning an income for themselves and their families, and ultimately preventing impoverished communities from growing and flourishing economically. Thankfully, these diseases can be treated and prevented at an incredibly low cost, making END7’s goal of ending the seven most prevalent NTDs by 2020 attainable – with the necessary political support and funding. Therefore, advocacy to policymakers is a crucial component of END7’s mission.

When I arrived in Washington, D.C., for Student Advocacy Day, I was unsure of what to expect, since I had never before been involved with advocacy on any issue – and certainly not at the political center of the United States on Capitol Hill! But I knew that regardless of my background, this would be a critical opportunity to help raise NTD awareness and provide a political voice for the 1.4 billion individuals afflicted by these diseases.

We began Advocacy Day with a coffee meeting with Senator Roger Wicker of Mississippi. During the meeting, I got to speak with two of the Senator’s staffers about END7 and the United States Agency for International Development (USAID) NTD Program. After briefly speaking with them about what we hoped to accomplish on Capitol Hill that day – building support for the USAID NTD budget – I felt even more confident and enthusiastic about our afternoon meetings with other congressional offices. Following our coffee meeting with Senator Wicker, we listened to speakers from Global Network for Neglected Tropical Diseases, USAID, RTI International and Helen Keller International. Each of these speakers gave a unique perspective on the various efforts from different agencies and organizations to eliminate these diseases and mitigate the debilitating effects they have on those already infected. We were then briefed on our meetings with congressional offices with some advocacy “nuts and bolts” and key points to cover about NTDs and the USAID NTD program.

Following our briefing, we divided into small groups of students from different universities and began brainstorming on how we would go about our meetings. During my group’s four meetings with Senate offices, we each spoke about an aspect of NTDs that we were particularly passionate about, ranging from the effects of NTDs on maternal and child health to the strong private public partnership that has been established to treat and prevent NTDs in 25 countries through the USAID NTD Program. We also made sure to bring up key points about the program, such as the incredibly low cost of just 50 cents to treat and prevent the seven most common NTDs, as well as the 678 million individuals that have received treatment from the USAID NTD Program so far! Since President Obama proposed a $13.5 million dollar cut to the USAID NTD program in his FY17 budget, our main goal of the meetings was to advocate against this cut – and push for an increase of $25 million to $125 million in funding for this program. Without this crucial funding, we risk losing the progress we have made toward ending these devastating diseases. We concluded our meetings by asking each Senator to support the increase in funding for the USAID NTD program as well as to join the Senate Caucus on Malaria and Neglected Tropical Diseases.

After spending one day advocating for NTD funding on Capitol Hill, I truly believe that it will not be my last. Although I felt passionate about END7’s goal before the event, attending Student Advocacy Day instilled in me an even greater passion for this issue and made me even more determined to help change the outlook for those affected by these debilitating diseases. The END7 Student Advocacy Day not only allowed me to participate in this crucial political process but has also inspired me to continue to make my voice heard to our nation’s lawmakers. I am excited to share this passion with others at Michigan State University and with members of our END7 chapter on campus. I hope to inspire and encourage others to participate in advocacy for NTD treatment to help make a positive difference in the lives of millions of people.

Tayler McCord is a senior at Michigan State University majoring in clinical laboratory science with a minor in global public health and epidemiology. She currently serves as the Secretary of END7 at MSU.

We Have the Solution and We Need to Use It: Advocating for the USAID NTD Budget in D.C.

The END7 campaign awarded scholarships to three outstanding student leaders to attend the second annual END7 Student Advocacy Day in Washington, D.C. Read scholarship winner Nicole Spitzer’s reflection on her experience in D.C.:

By Nicole Spitzer, University of Central Florida College of Medicine

I was introduced to the END7 campaign while I was in the midst of planning a Global Health Conference at my medical school, the University of Central Florida College of Medicine. The theme chosen for this year was “The Global Burden of Neglected Tropical Diseases,” which was a topic that, even as a first-year medical student, I knew nothing about. My team and I began to research what NTDs are and how NTDs affect not only those infected, but also their families, the communities they reside in, and the economies of their respective countries. What struck me most while I was learning about NTDs was this question: why is this such a giant problem if many of these diseases are easily treated and cured? My faculty advisor, Dr. Judith Simms-Cendan, who has completed research on the NTD schistosomiasis, pointed my team to the END7 campaign. We decided to donate a portion of conference registration fees to the campaign and invited Dr. Maria Elena Bottazzi of the Sabin Vaccine Institute, home of END7, to deliver the keynote at the event. I became so interested in NTDs at the conference that when it was over and I received an invitation to attend the second annual Student Advocacy Day in Washington, D.C., I knew I wanted to make the trip.

Nicole after a meeting in the office of her representative, Alan Grayson of Florida.

Nicole after a meeting in the office of her representative, Alan Grayson of Florida.

My trip to D.C. was nothing short of a whirlwind, as I was there for only 26 hours! On my flight from Florida to D.C., I was vigorously preparing for the four meetings I was scheduled to attend the next day in order to advocate for funding for the USAID NTD Program. I was delighted to see that my team would be meeting with the staffers of two Florida Members of Congress, Senator Marco Rubio and Representative Alan Grayson. As a constituent of their state, I knew that my team would have their full attention to advocate and raise more awareness for NTDs. I also knew that I would be able to provide a different angle as a medical student and future physician and I looked forward to meeting the other students I would be working with.

Before we headed into a long afternoon of meetings, we were briefed by representatives from USAID, RTI International and Helen Keller International, who provided us many compelling facts we could bring into each meeting. Kalpana Bhandari from the ENVISION project at RTI international shared personal stories that were very touching. Some of her family members live in Nepal, including her aunt, who works as one of the community health workers who lead local mass drug administration (MDA) campaigns. Emily Toubali, a representative from Helen Keller International, shared the details of a plan being rolled out to treat the morbidity and mortality associated with blinding trachoma and lymphatic filariasis, commonly known as elephantiasis. As a medical student, hearing these stories and learning about these programs has inspired me to become more involved in the global NTD effort in the future. From these briefings, we learned many strategies on how to conduct each meeting with a congressional office, highlighting the most compelling reasons for each member to support the USAID NTD Program budget.

Our afternoon of meetings was very successful, as my team consisted of students from a variety of different backgrounds, each offering a new and unique perspective on the effect that NTDs have on the communities that are affected and how the United States can help. As a future physician, my main argument was that we need to care for all human beings, regardless of where they are from. We have the solution and we need to use it. One student in my group, Beza Teferi, is originally from Ethiopia and has seen and experienced the effects of NTDs herself. Another student, Imani Butler, was able to provide the perspective from a research point of view. Her message was that we have a simple solution to these problems, so why not use them. Malvika Govil, a student from Rice University, discussed how the money allotted has a multiplier effect — for every dollar invested in treatment programs, pharmaceutical companies donate $26 worth of medicine. Finally, Sujay Dewan, from the University of Pennsylvania, delivered the request — an increase of the USAID NTD Program budget to $125 million to ensure that the progress of the last decade continues and control and elimination efforts succeed, so we do not lose ground on the work that we have already accomplished.

Our approach really seemed to resonate in the meetings. Senator Lindsey Graham from South Carolina and Senator Marco Rubio from Florida are both proponents for global health and we received very positive feedback from their staffers. The staffers of Colorado Senator Cory Gardner and Florida Representative Alan Grayson had many questions for us, which really allowed us to explain in depth what NTDs are and how they are affecting the world. We finished our meetings confident that we had made an impact and helped build support for the USAID NTD Program in Congress.

Barbara Bush, CEO and co-founder of the Global Health Corps, captured the central tenet of our advocacy best during her keynote our closing reception: “We are all here because we agree on one thing: health is a human right.” She also emphasized that, “great ideas don’t change the world, great people do,” which is why we need to act on these ideas now. As young leaders in our schools and communities, we have the passion and the voice to do so.

Nicole meets Barbara Bush, CEO and co-founder of Global Health Corps, at the closing reception of the second annual END7 Student Advocacy Day.

Nicole meets Barbara Bush, CEO and co-founder of Global Health Corps, at the closing reception of the second annual END7 Student Advocacy Day.

Nicole Spitzer is a first-year medical student at the University of Central Florida College of Medicine. Learn more about her experience at the END7 Student Advocacy Day in this article.

To Helminth It – Let’s Go to D.C.

The END7 campaign awarded scholarships to three outstanding student leaders to attend the second annual END7 Student Advocacy Day in Washington, D.C. Read scholarship winner Cyrus Ghaznavi’s reflection on his experience in D.C.:

By Cyrus Ghaznavi, Rice University

Nearly a year after the first ever END7 Advocacy Day in April of 2015, I was back on a plane headed nonstop to Reagan National Airport. The second annual Advocacy Day was less than 24 hours away!

Over the past year, Rice University’s chapter of END7 has grown significantly. Our general membership and committees have expanded and awareness of our cause on campus has blossomed. We have hosted trivia nights, fundraisers, Super Smash Bros video game tournaments, petition drives, and much more. Consequently, what once started as a relatively obscure club on campus has now gained significant traction within the Rice community.

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Cyrus (far right) and his group meet with Representative Ami Bera of California on the second annual END7 Student Advocacy Day.

However, though we have worked extensively to advocate for NTDs “inside the hedges,” the Rice chapter of END7 strongly believes that official policy change is needed to successfully control and eliminate the seven most common NTDs. In fact, our mission states that “END7 at Rice is an organization that strives to raise awareness…for our mission with local and national policymakers.” And so, when I was faced with the question of whether or not to attend the second annual END7 Advocacy Day, it was a no-brainer.

The momentous day was kicked off by Senator Roger Wicker, co-chair of the Senate Caucus on Malaria and NTDs, who had invited the END7 group to morning coffee. After socializing and meeting our morning coffee quota, we took pictures with the Senator, who explained that NTDs are an issue very near and dear to his heart. After coffee, we were welcomed by Dr. Neeraj Mistry, Managing Director of the Global Network for Neglected Tropical Diseases. We were then presented with informative presentations by representatives from the U.S. Agency for International Development, RTI International, and Helen Keller International, before grabbing lunch in our small groups.

Last year, I had the pleasure of working with Kathryn McGrath, who works with END7 as a member of the Global Network staff, as the leader of my small group. Perhaps not coincidentally, she was my group’s leader again, so we immediately had a dynamic and strategy for how to pitch our case to the four House Representatives we would be meeting that day. Working with my teammates Antonia, also from Rice University, and Elaine, from the University of Texas at Dallas, we devised a division of labor as to which points we would each hit in our meetings with staff.

Kathryn started each meeting with a brief introduction to END7, after which Elaine jumped in by sharing some of USAID’s most persuasive statistics. One of every six people globally suffers from one of the seven most common NTDs. For every $1 invested into the program, $26 worth of donated pharmaceuticals are leveraged. For a mere $0.50, an at-risk individual can be treated and protected from the seven most common NTDs for a year. So far, 1.4 billion treatments have been distributed to almost 700 million individuals. Antonia would then shift gears and relay some of the more human, emotional aspects of the program and NTDs. She mentioned that children miss school and parents miss work when infected, reinforcing the cycle of poverty. She went over some of the disfiguring and debilitating symptoms of these seven diseases, and wrapped up by talking about the stigma associated with them. At this point, I pounced by synthesizing what those before me had mentioned. I asked if the Representative would support increasing USAID NTD funding by 25 percent instead of allowing it to be cut by 13.5 percent. Additionally, I implored the staffers to encourage their Representatives to join the Congressional Caucus on Malaria and NTDs, if they were not members already. “This is not the time to lose momentum – USAID funding is critical during this watershed time,” we would conclude.

We had four successful meetings with Representative staffers, and even got to meet one of the Representatives in person: Rep. Ami Bera (D-CA), with whom we briefly chatted and took some pictures! He was a very unique case, given that he has an M.D. and can thus see NTDs from both a medical and political standpoint. As a pre-medical student studying both biology and policy, I felt that my interaction with Rep. Bera was particularly meaningful – especially since my group also visited his office during the 2015 END7 Student Advocacy Day!

At the end of the day, we all attended a reception where Barbara Bush, CEO and co-founder of Global Health Corps, and Peter Hotez, president of the Sabin Vaccine Institute, spoke to the END7 advocates. Ms. Bush’s speech was truly moving and inspiring, urging us to global health action. Dr. Hotez recounted the beginnings of END7 and the USAID campaign, putting all of our advocacy into a unique, historical context.

And before I knew it, the day was over. As a group of nearly 50 students and leaders, we had spoken to almost 40 congressmen/women or their staff. Our pitches were not partisan, nor were they communicated out of self-interest: we were all passionate voices in the realm of NTDs, and we were all thrilled to be in the Capital.

Speaking for Rice, I cannot express how proud I am of the growth and commitment I have seen in just one year’s time. Last year, three students, including myself, attended this trip. This year, we had almost 20, comprising the large plurality of the advocates who attended (even compared to the schools in Washington)! I can only imagine how much more growth we will see in the coming years. Here’s to counting down to next year’s advocacy day!

Barbara Bush with student advocates from Rice University at the END7 Student Advocacy Day closing reception.

Barbara Bush with student advocates from Rice University at the END7 Student Advocacy Day closing reception.

Cyrus Ghaznavi is a junior at Rice University studying Biological Sciences & Policy Studies. He represents Rice on the END7 Campus Leaders Council and participated in the END7 Student Advocacy Day in 2015 and 2016.