Ask a group of people to look back and assess 2021 and you might hear a collective groan. But even the added burden of a wearying pandemic couldn’t dampen the hopeful outlook of these 16 advocacy group leaders, patients and employees. Here’s how they answered the question: What inspired you in 2021?
Anthony J. Castaldo, President and CEO
US Hereditary Angioedema Association (HAEA)
For the past two decades, people with HAE have enthusiastically participated in the HAEA biannual National Summit. Our entire community looks forward to catching up with HAEA friends, learning about progress being made in HAE research and therapies, and experiencing a sense of belonging within our special group. Of course, COVID restrictions led to cancelling the 2021 event causing a palpable sadness amongst our HAEA membership. Inspiration could be found in abundance throughout our entire community when, undaunted by technological challenges, the HAEA staff put together an interactive virtual summit that completely mimicked our in-person events. It was likewise inspiring to see the HAEA community embrace the virtual summit concept and break all of the participation records established for in person events.
Lisa Butler, Executive Director
GBS|CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Foundation International
The strength and courage of the patients is truly inspiring. In 40 years, we have never lost sight of the patients, and we continue to put their needs first. By providing accurate information, created by worldwide experts for patients and families, we educate the community. With our deeply dedicated, all- volunteer Global Medical Advisory Board, we provide access to the world’s top experts for all families. Through our many programs, we provide a space where patients can meet patients. Building this community connection is the heart of what we do.
Coaching our patient community to be advocates is incredibly fulfilling. Providing the training to infuse confidence in speaking with members of U.S. Congress or Senate truly emphasizes that every journey matters. Listening and sharing these stories brings awareness and empowers every patient. I hope we are always listening more than talking. In listening, we are constantly looking for the next unmet need and then we go to work to create a program or locate the best resource. The ability to continually evolve and deepen our response is such a privilege. We have a very dedicated Board of Directors and a staff team that is so devoted. This combination provides the groundwork to inspire, empower and execute our next emerging strategy!
Tammy Black, Communications Vice President
Immune Deficiency Foundation
While the world is still adjusting to a "new normal" in the wake of COVID-19, it is heartening to see that there is a greater understanding of what it means to be immunocompromised.
Dr. Leonard Valentino, President and CEO
National Hemophilia Foundation - - New York, NY
The resilience and resolve of the community has been inspiring and invigorating to me personally. To see continued engagement on the part of people with blood disorders has been very fulfilling.
Nathan Roth, Vice President Plasma Product Development
CSL Behring
What inspired me was the continued resilience of our lab teams. Through the ebbs and flows of the pandemic, they have been steadfast and committed to delivering on their projects with a "can-do" attitude. Pretty awesome, actually.
Nicole Millis, CEO
Rare Voices Australia
This year, I once again found myself admiring the rare disease sector’s ability to be resilient, adaptive and resourceful. COVID-19 has had an ongoing impact for the entire sector, particularly those in New South Wales and Victoria in 2021. Yet, despite the backdrop of the pandemic, implementation of the National Strategic Action Plan for Rare Diseases continues progressing. Our RVA Partners (rare disease organizations) also continued their tireless advocacy efforts on behalf of their community. So many of these organizations are volunteer-led and under-resourced — I’m constantly inspired by their dedication and commitment.
People living with a rare disease made Rare Voices Australia’s (RVA) 2021 Virtual National Rare Disease Summit a clear highlight. The voices of people with lived experience led the event and were rightly at the forefront of the entire day. We heard so many personal reflections that reiterated why the work that RVA does is so important: to advocate for the best outcomes for Australians living with a rare disease.
The other highlights that come to mind are the systemic approaches that help to change people’s lives: the ever-increasing interest in rare diseases from politicians at both a federal and state level; newborn bloodspot screening (NBS) reform, work that is ongoing; the recommendations report presented to the Parliament following the Inquiry into approval processes for new drugs and novel medical technologies in Australia, which has dedicated sections on rare disease and the patient voice; ongoing research investment into genomics as well as rare diseases and rare cancers via the Medical Research Future Fund (MRFF); rare disease expertise appointed to the National Health and Medical Research Council (NHMRC) for the first time; and so much more! I am constantly inspired by the entire rare disease sector’s willingness to come together to work towards the best health and wellbeing outcomes for the estimated 2 million Australians living with a rare disease.
Rob Long, Executive Director
Uplifting Athletes
I was inspired by the rare disease community we serve. The rare disease community is unbelievably resilient and has continued to press forward in the most difficult of circumstances. We will be right alongside them continuing to do all we can to bring awareness and support vital research to those impacted by rare diseases.
Shane Fitch, Founder and CEO
Lovexair Foundation, a nonprofit assisting patients with respiratory conditions
I was inspired by our efforts to deliver the care support and resources online that would help people check on their health and receive the guidance they need to manage when isolated at home.
Fitch’s son, Arran Strong, a patient advocate and competitive surfer training for the next Olympics
Lovexair Foundation
A lot of different athletes have inspired me to stay positive and find ways to have a healthy mindset.
Victoria McCallum, patient
CSL Plasma’s Adopt-A-Patient program
My hero and inspiration in 2021 was my daughter who works at a CSL Plasma Donation Center. She worked diligently all during the pandemic. She had a virtual wedding without the traditional honeymoon, moved to a different house and is now expecting a baby. She accomplished all this while remaining devoted to her donors and coworkers at CSL! The donations help make life-saving products for patients living with rare health conditions. What a loving example of inspiration for the entire rare health community!
Lutz Bonacker, Senior Vice President and GM for Commercial Operations Europe
CSL Behring
When I reflect on the year 2021, I see commitment, perseverance and, sadly, a degree of frustration that we are not further along in managing the global COVID-19 crisis. However, examples by the medical and patient communities we regularly interact with as well as by my colleagues at CSL Behring that maintained a positive and forward-looking attitude, no matter what, have never failed to inspire me in a difficult year.
Vicki and Fred Modell, Founders
Jeffrey Modell Foundation
At the Jeffrey Modell Foundation, we have been inspired by the courage of our patients and the extraordinary efforts of our doctors, nurses and all who came to work each and every day with determination, compassion and bravery – not knowing what the day might bring.
Johan Prevot, Executive Director
International Patient Organisation for Primary Immunodeficiencies (IPOPI)
In 2020, the PID (primary immunodeficiency community had come together to face the huge challenges that the pandemic brought to the world in a remarkable way and our community has continued to do so throughout 2021. We have learned to navigate the pandemic and its waves as it affects the world and its regions in different ways at different times. We have adapted our approaches and used risk-benefit decision-making efficiently. Our ability to collaborate effectively with our stakeholders has enabled us to successfully drive numerous actions and campaigns as well as organize important educational, policy and membership skills building events.
Among these successes: We have worked with the European Society for Immunodeficiencies and the International Society for Neonatal Screening under the Screen4Rare initiative to push for an action on newborn screening (NBS). Other successful multi-stakeholder campaigns together with our national member organizations and other partners included: tackling head-on the current issues our community and others are facing with regards to access to IG therapies due to the 20% drop in plasma collection resulting from the pandemic; International Plasma Awareness Week’s social media campaign to share centered PID patients “true stories;” and lastly, together with the input of several leading PID medical key opinion leaders, IPOPI recently published in Frontiers of Immunology a publication entitled “The PID Principles of Care: Where are we now? A global status report based on the PID Life Index.”
These are just a few examples of how our community and its stakeholders have been able to face the challenges brought about by the pandemic and find ways to utilize them and turn them into opportunities to raise awareness about prevention and the importance of access to diagnosis and care for PID patients.
Frank Meuers, patient
CSL Plasma Adopt-A-Patient Program
I was inspired to observe the medical community and drug manufacturers working together to try and develop a vaccine for all to use and to issue guidelines for maintaining our present health and preventing COVID from invading our lives.
Alain Baumann, CEO
World Federation of Hemophilia
Although 2021 was again disrupted by the COVID-19 pandemic, the WFH and the bleeding disorder community around the world were able to continue to make progress throughout the year! We are now providing a wide array of training to health care professionals and national member organizations thanks to online webinars and more countries joined us in our World Bleeding Disorder Registry program to help increase the standard of care of every person with a bleeding disorder. One point that particularly inspired me this year was that our Humanitarian Aid Program reached 1 billion IUs donated. 2020 slowed down our program but I’m proud to say that we are more than back on track in 2021!
