Rare Leader: Nadia Bodkin, Trailblazer of Rare Advocacy, The Rare Advocacy Movement

The Basics

Name:  Nadia Bodkin

Title: Trailblazer of Rare Advocacy

Organization: The Rare Advocacy Movement

Social Media:     

Disease focus: Rare Diseases

Headquarters: Virtual

How did you become involved in rare disease:  When I was diagnosed with Ehlers-Danlos Syndrome, I founded EDSers United. Through my advocacy efforts at EDSers United, I was introduced to the rare disease community and became devoted to serving rare disease communities through various projects and initiatives.

Previous career:  I worked in pharmacy as an intern and upon graduating entered the nonprofit advocacy world.

Education:  Doctor of Pharmacy and Master of Science in Genetics from Rutgers University

The Organization
Organization’s mandate: The Rare Advocacy Movement (RAM) is an interactive network of morally-vetted patient advocacy leaders focused on documenting the complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM’s objective is to serve as a Center of Insight for all stakeholders by amplifying the real-world voice of the rare disease community in a morally conscious manner, keeping the best interests of the patients and members of their support teams at the forefront of all initiatives. RAM functions on the importance of integrity within the patient advocacy community and aims to support transparency, clarify misunderstandings, and ensure that the rare disease community is not overlooked, ignored, or misrepresented.

Organization’s strategy: RAM is comprised of three distinct members that serve the network in a specific capacity.

• Trailblazers of Rare Advocacy: Trailblazers are seasoned rare disease advocates with a proven strong moral code and understanding of the rare disease advocacy landscape from the patient/caregiver/sibling community perspectives. Trailblazers are well-rounded advocates who have vowed to mentor disease-specific advocacy leaders new to the general rare disease space. Trailblazers are uniquely positioned and willing to utilize years of experience to identify mutually beneficial solutions among the various interests and agendas that exist throughout the landscape of stakeholders within the rare disease ecosystem. Should any conflicts hinder a Trailblazer’s ability to serve the Rare Advocacy Movement’s goals and maintain the network’s moral integrity, then that Trailblazer agrees to graciously step down.
• Advocates in the Spotlight: These advocates have demonstrated promise of becoming a future Trailblazer. These individuals are rare disease advocacy champions who have been paired with at least one Trailblazer in the form of mentorship, and are increasingly becoming more actively involved in the general rare disease advocacy community. Advocates in the Spotlight are fresh opinion leaders that believe in the power of collaboration and are proven experts within their disease specific communities.
• Trusted Members of Industry: Successful collaboration begins with trust. Trusted Members of Industry are rare disease professionals who have strong moral codes and are actively involved in empowering the development of the patient advocacy industry. Trusted Members of Industry have effectively conveyed a genuine understanding and respect for the concept of patient-centricity and are participating in programs and initiatives to generate and support a truly patient-centric culture within their respective organizations, companies, and overall network. Trusted Members of Industry are nominated by at least two Trailblazers and membership confirmation is determined by majority vote of all Trailblazers.

Funding strategy: RAM is internally funded and has a fiscal sponsorship agreement with Abilitylist, a 501c3 organization. This allows for all donations written out to RAM to be tax deductible.

What’s changing at your organization in the new year: RAM members are focused on partnering with other stakeholders to develop whitepapers, surveys, programs, and initiatives that help to address needs and concerns important to the community.

Through a partnership between RAM and Covance, a survey has been created to gain a clear understanding of the evolving perspectives of patient advocacy groups and their role in drug development. We ask that advocacy leaders take about 10 minutes to answer some questions in order to help us utilize the results to continue to find ways to better embed the critical pulse of the patient advocate throughout the drug development continuum. The link to the survey is  https://www.rareadvocacymovement.com/copy-of-ram-survey-2018.

In addition, to the whitepaper and survey development collaborations currently taking place between RAM members and other industry stakeholders, RAM has recently partnered with Bleu Moon [provider of training and education on skillful communications for medical professionals] to bring compassion and trust back to the patient—healthcare professional relationship utilizing Dr. Anthony Orsini’s BBN [Breaking Bad News] training method.

Some future programs that we hope to implement once we acquire the funds to do so include the following:

• Travel Scholarship Program: a dedicated fund of resources to provide travel assistance to Advocates in the Spotlight and Trailblazers to attend educational meetings and conferences focusing on rare disease initiatives and priorities.
• Trailblazer Mentorship Program: A formal set of standards for Advocates in the Spotlight to be mentored by Trailblazers to expand the knowledge base of the rare advocacy landscape while ensuring the satiability of RAM’s mission.

Management Style
Management philosophy: I do my best to establish a healthy work environment that promotes productivity, efficiency, and growth. I don’t believe in the traditional hierarchal system that allows management to mistreat their colleagues and belittle team members as subordinates. I believe in team work and that every person that is brought on to be a member of the team is vital and should be treated as such. When hiring someone, you vet them for a reason. Once they show that they can be a valuable member of the team, they need to be given the opportunity to contribute and grow. I also believe in holding people accountable to the responsibilities they agree to take on and when those responsibilities are taken care of, recognizing jobs well done and rewarding those who chose to go above and beyond.

Guiding principles for running an effective organization: Working within the rare disease ecosystem one must understand each stakeholder group involved and engage them appropriately. While there may be shared goals, it is important note that each stakeholder can have varying perspectives, agendas, and motivations. There are times where differences in agendas may not align and conflicts of interests may arise. It is important to note that stakeholder perspectives may not be fully understood by other stakeholders, and require a representative from that specific group in order to be properly conveyed and represented.

In order to obtain successful mutually beneficial collaborations amongst all parties, it is important to identify which stakeholders are directly impacted and/or involved. Once all stakeholders have been identified, it is advisable to extend an invite to a trusted representative of each group in order to ensure that each perspective is accurately represented during collaborative discussions.

Best way to keep your organization relevant: The best way to keep your organization relevant is to accommodate the needs of the community and develop programs that will allow the community to thrive and flourish as a unit. In order to accomplish this, the organization’s leadership and other appropriate active members must maintain regular and respectful communication with the community’s key opinion leaders and be open to welcoming and mentoring passionate advocates new to the community.

Why people like working with you: I don’t believe it is my place to impart judgment on any individual, regardless of whether or not I understand the reasons for the choices they choose to make.

Mentor: So many people have provided mentorship to me. My mother was my first mentor. She taught me how to find strength from within. Dr. Kenneth Rheul, my former pathophysiology professor, was the first person to tell me I that I am a “hidden gem” for having been born with debilitating rare conditions and for not allowing it to stop me from accomplishing my goals, which meant so much to me since I had just been diagnosed with Ehlers-Danlos Syndrome and told that I will have to spend the rest of my life in debilitating pain. Steve Groft, Senior Advisor to the director, National Center for Advancing Translational Sciences, was amongst the first person within the rare disease community to welcome me with open arms and truly encourage me to develop my overly ambitious projects, regardless of any potential hurdles that may exist. Stephanie Fischer, strategic communications consultant to Global Genes, was the first person to teach me about hashtags. Dawn Ireland, founder and president of CDH International, is such a wealth of knowledge from all her years of advocacy efforts and nonprofit management. Gina Szajnuk, co-founder and executive director for the Rare and Undiagnosed Network, was the first to comfort me after experiencing burn out from my advocacy efforts, which provided me with the strength to continue pushing forward. Jayne Gershkowitz, chief patient advocate at Amicus Therapeutics, was the first member of industry to open her doors to me and offer such valuable insights. And last but not least, Lisa Schill, vice president at RASopathies Network USA, taught me the art of networking.

On the Job
What inspires you: Waking up to a new day inspires me. Still being able to walk and have my cognitive functions intact inspires me. In short, simply being alive with the ability to maintain my independence inspires me.

What makes you hopeful: All of the amazingly ambitious and motivated people that I have met through rare disease advocacy makes me hopeful that treatments will be brought to the market and made accessible to patients who have received a diagnosis that doesn’t yet have a cure or a treatment option that improves quality of life. Good science and members of industry who truly understand the value of partnering with advocacy leaders in order to ensure that life-improving treatment options make it to the market, make me hopeful that we will stop losing viable treatment options to unrealistic clinical trial designs.

Best organization decision: The best decision so far has been to offer all the members of RAM to join a communication platform called Slack. Slack offers the members of RAM a safe place amongst like-minded advocacy leaders to communicate and collaborate.

Hardest lesson learned: Some people struggle with aligning their personal agenda(s) with the overall best interests of the community and/or communities they aim to serve. I had a hard time understanding this dynamic in the nonprofit sector and learned how important it is to allow time to appropriately vet each potential partnership.

Toughest organization decision: The toughest organization decision to implement was to actively hold all members of industry interested in partnering with RAM to the same moral and ethical standards as the advocates interested in participating in RAM coordinated projects and initiatives. At times, ethical standards are not obvious to certain stakeholders, which requires professional, honest and open communication between parties.

Biggest missed opportunity: Because RAM functions to connect newer advocates with more seasoned advocates internally, there are several opportunities to learn from each other’s individual missed opportunities and for the more seasoned advocates to provide guidance to the newer advocates so that the same mistakes aren’t repeated. I have personally found missed opportunities present themselves when teams do not communicate openly and effectively. Therefore, establishing clear channels of communication where every member of the team feels like their voice and opinion is important and has a safe place to be voiced is at the core of all of the projects and initiatives that I have the opportunity to facilitate.

Like best about the job: I enjoy having a direct connection to my fellow advocacy leaders. No one can possibly understand the rare disease experience without experiencing it themselves. When two people from the rare disease world meet and exchange just a few words for the sake of connecting on a human level, without any attached agendas, a unique connection is made that penetrates to the core. The similarities that connect rare people, regardless of whether they share the same rare condition or not, regardless of being a parent, a patient, a sibling, a spouse, or a friend, has allowed us to develop such a dynamic, intelligent, passionate and loving community. I view the people of the rare disease community as an extended family. Patient Advocacy Summits feel like family reunions. RAM members are not only my colleagues, but they are my soul sisters, brothers, mothers and fathers; and I plan on being there to help any way I can for as long as I am physically and cognitively capable.

Like least about the job: I feel so uncomfortable with self-promotion. I enjoy working behind the scenes and helping other advocacy leaders increase their public profiles for the benefit of their advocacy initiatives. I also do not enjoy conducting solo speaker presentations. I prefer participating in panel discussions, where everyone’s opinions are allowed to be presented organically.

Pet peeve: Individuals who don’t believe every human being is worthy of respect and should be treated with integrity and empathy regardless of race, ethnicity, sex, education, gender preference, etc.

First choice for a new career: I would like to own a vineyard and bring my own sets of wine to the market.

Personal Taste
Most influential book: There are way too many books in my history that have had an influence on me. Currently, I take advantage of Audible. The current book that I am listening to is Journey of Souls by Michael Newton.

Favorite movie: I prefer thought provoking movies like Inception, where you can watch it several times and capture different understandings with each view. I also like survival action movies like 300 or Gladiator, especially because my body is so limited.

Favorite music: Music is completely dependent on my mood. Sometimes I need to listen to Luther Vandross and Boyz II Men. Other times I embrace my millennial side and jam out to Rihanna, Beyoncé, and Ed Sheeran. Other times I am in the mood to reminisce back to family BBQ’s from my childhood and listen to reggae, merengue, bachata, and salsa.

Favorite food: I enjoy a variety of food but lately I have noticed that I am always in the mood for a good steak salad

Guilty pleasure: A glass of red wine in the evening

Favorite way to spend free time: Filtering through my emails and social media messages. I find it stressful to have built up emails, which I can’t seem to escape lately so any free moment I get I log into my accounts and tackle them until I either fall asleep or have to run off to a meeting.

January 31, 2019