A Tribute to Val Bias

Val Bias

Thank you, Val!
Joe PugliesePresident & CEO of Hemophilia Alliance

I have had the privilege of being part of the hemophilia community for more than 40 years now. The absolute best part of this whole experience has been getting a chance to work with and getting to know so many wonderful people, from every part of the community.

It is hard to pick a favorite from so many. It is also hard to pick the one person who had the most profound positive impact on the lives of the bleeding disorders community. It is however easy to say that Val Bias has left the community far too soon and far better off than it would have been without him. As many of you know, Val sadly passed away on 12/30/2021. I do not remember exactly when I met Val for the first time, but I remember the last time we were together. Karen, Robin, Langston, Val, and I had a lovely dinner on the Jersey shore when they were staying at our beach house.

The 1,000 mega-watt smile and the booming laugh that seemed impossibly large for a person his size, defined the person he was: just bigger than life. After a life dedicated to this community in a variety of roles, he became the CEO of the National Hemophilia Foundation. He was a steady hand that guided NHF through some turmoil and it is a much stronger organization now. The more that Val gave, the more that the community responded. The list of his accomplishments are noted below by many who knew him so well. What I think made Val so unique was his ability to get others to see and believe in his vision for the community and convince them that they could advocate for themselves.

Val is survived by his wife of 20 years, Robin, and their beloved son, Langston, who have shared Val and supported his work and the community. While we remember Val’s enormous contributions, let’s not forget his family. Donations in Val’s memory can be made to the National AIDS Memorial.

I have asked others in the community who worked with him for years to let me share their remembrances here. Please read below.

National Hemophilia Foundation

NHF Mourns the Loss of Longtime CEO, Val Bias

Dec. 31, 2021 – New York, NY – NHF is deeply saddened to announce that former NHF CEO and community member, Val Bias, passed away suddenly on Thursday, Dec. 30.

NHF will forever honor Val’s legacy and all that he accomplished for the inheritable blood disorders community in the United States and internationally. Most remarkably, Val was a uniquely skilled community builder, building bridges, coalitions and cultivating champions for our community. Prior to his tenure as CEO of NHF, Val served as Chairman of The Board of Directors of NHF from Jan 1992 – Jan 1994. He also served in multiple capacities on the global stage working closely with the World Federation of Hemophilia, including advancing the International Twinning Program.

Val Bias

Val transformed the NHF chapter network unifying and strengthening our voice and impact from the statehouse to the halls of Congress. His many notable contributions included establishing the first NHF Washington Days and championing the National AIDS Memorial’s Hemophilia Circle. As CEO he led NHF into a new era of growth and service, he stabilized NHF funding and built programs to serve those who had been left behind. His lifelong commitment to families and youth was no more evident than through his commitment as a summer camp counselor and innovative summer camp programming in his service as Camp Founder and Staff Director of Camp Hemotion: Camp for Children with Bleeding Disorders. He began his career with NHF in Washington championing the passage and funding of the Rick Ray Act and working to transform the regulatory framework to ensure the tragedy of HIV/AIDS would not repeat. His impact and the effect of his forceful advocacy will long be felt, from the halls of power at the U.S. Capitol Building, to the arts and crafts room at local summer camps. “The reason NHF and the inheritable blood disorders community has come so far is because of what Val was able to accomplish,” said NHF President and CEO Len Valentino. “I had the honor to walk alongside Val both professionally and personally and can say with certainty that what he has done throughout his life inspired change. His legacy will live on forever, and he will be greatly missed.”

Mother of Ryan White, Jeanne-White Ginder said in tribute “I am most grateful to Val for including me in the hemophilia community and widening the circle to make sure everyone’s voice was heard. He made sure our losses were not forgotten, especially through his efforts to include the hemophilia community in the National AIDS Memorial Grove. Val knew the hemophilia community because he lived hemophilia alongside all of us. In spite of his own health battles and personal losses, he carried on with courage and strength that inspired us all, making him not only an accomplished leader but a role model that will never be forgotten.”

NHF and the community are heartbroken over this sudden loss. Val served as NHF’s CEO for over a decade and carved the path for the organization’s continued growth and sustainability. NHF extends sincere condolences to Val’s beloved son Langston, his loving wife of twenty years, Robin, and his entire family.

NHF looks to respect the Bias family’s privacy at this time and will provide further information to the community at an appropriate time. All condolences and communications may be sent to communications@hemophilia.org.

World Federation of Hemophilia

On December 30, 2021, the global bleeding disorders community lost a great leader: Val Bias, former CEO of the National Hemophilia Foundation (NHF). Yesterday, the World Federation of Hemophilia (WFH), published a condolence article. Today, three WFH leaders share their thoughts on the former NHF CEO.

“Throughout the years, I have had many chances to work with, and get to know, Val Bias. I was always very impressed by his passion, and very appreciative of his support of initiatives for Latin America. Val was someone who knew how to overcome challenges and get people working together for the greater good.”
—Cesar Garrido, WFH President

“Val Bias was a remarkable man and left a lasting impact on our community. His spirit of activism, hope and drive will live on in the many individuals he touched during his life.”
—Glenn Pierce, MD, PhD, WFH Vice President, Medical

“I got to know Val Bias during the preparation and hosting of the WFH World Congress in Orlando, Florida, U.S.A., and through many meetings with the NHF. I was impressed by his dedication, extraordinary charisma, and leadership.”
—Alain Baumann, WFH CEO

Dana Kuhn

Val BiasIn October 1992, there were 5 NHF men (depicted in picture) who were determined to change the NHF narrative. The picture depicts Jonathan Botello, Dana Kuhn, Val Bias, Rich David, and Donald Colburn. At the peak of growing concern with HIV infection among men with hemophilia, the Women’s Outreach Network of the NHF was created to educate women to protect themselves from infection. Through similar life experiences, Val and I decided we needed to create a men’s advocacy group. The pandemic of HIV called for a change in narrative of the national organization. The 5 men realized it was their responsibility to teach men with HIV how to protect women or their partners from HIV infection and empower men to educate others to become leaders in their communities.

These 5 men convinced NHF to create the Men’s Advocacy Network of the NHF (MANN), which brought altering changes to NHF. The change was training and placing men with Hemophilia in places of leadership. As a result, Val became the Chairman of the Board of Directors of the NHF, and Glenn Pierce became the President of NHF. Many of us became directors on the NHF Board. Under new leadership NHF began to work through their decisions and responsibilities of the HIV pandemic. With the leadership of Val Bias, positive change was made. The community was unified to work on the Ricky Ray Hemophilia Relief Fund Act of 1995. New, improved, and safer hemophilia products were coaxed into coming to market. The safety of the Nation’s blood supply became a priority especially through blood/plasma collection processes. Government agencies and Cabinet level committees accepted hemophilia consumer members to these positions turning a listening ear to their concerns and perspectives. NHF created initiatives under Val Bias and Donald Colburn challenging the raising of funds for research in gene therapy for a CURE. Under Val’s leadership “Chapter Development” was made a priority and programs were implemented. Chapters became stronger and more universally developed. I could go on with much more.

How can I impress upon the bleeding disorders community the passion and compassion this leader had for his community and the awesome change he facilitated coming out of NHF’s challenges with the HIV pandemic? We need to honor this leader and the work he accomplished to help make this community better. The NHF Board and leadership, the Chapters, Youth Leadership Programs, Cure for the Disease programs, educational programs, relationships with donors would not be where they are today without his leadership.

Lastly, the second picture depicts our friendship over 30 years. Through similar tragic experiences we were drawn to friendship. No matter the different paths our lives led us, we never lost our friendship and finding times to talk about our goals and passions for the bleeding disorders community. I encourage those who read this to express your appreciation for his leadership which created positive change for you and your family. As I look at this picture, I am the only one living. These other leaders and heroes of the bleeding disorders community lived their lives and gave their lives for the changes and benefits we experience in our everyday lives. I will be forever grateful.

Dr. Marion Koerper

By Dr. Marion Koerper

As a child living in New York state Val was diagnosed with severe hemophilia B. As a young adult he moved to the Bay Area in Northern California to be the activities director of the Albany YMCA and became a patient of the UCSF HTC. At that time, the UCSF HTC in conjunction with the Children’s Hospital Oakland HTC and Hemophilia Foundation of Northern California (HFNC) were planning to hold the first hemophilia Summer Camp in Northern California; Camp Hemotion, and Val was the logical choice to become the program director of the camp. He served in that capacity for many years until he moved to New York City to become the CEO of the National Hemophilia Foundation (NHF). While Camp Hemotion director, he established a leadership program for the campers in which they learned leadership skills while progressing from camper to Assistant Counselor to Junior Counselor to Senior Counselor with increasing responsibilities at each level. How proud the campers were when they won their red Senior Counselor red jacket! These leadership skills could be applied to other organizations in school etc. The final proof of the success of Val’s leadership program is the fact that many of these senior counselors are now planning and running Camp Hemotion each year.

Another area of interest for Val was Blood Safety. As co-chair of the NHF Blood Safety Working Group with Dr Koerper, they made monthly trips to Washington DC to meet with the FDA to encourage them to mandate testing of all blood donations to ensure the safety of the blood supply for all Americans. Another concern of Val’s was AIDS. Having lost many of his good friends in the hemophilia community to HIV, he worked with the National AIDS Memorial Grove in Golden Gate Park in San Francisco to establish the Hemophilia Memorial Circle, which memorializes all those in the hemophilia community lost to AIDS. In addition to all these accomplishments, Val was a superb CEO of NHF, establishing research programs with the Centers for Disease Control (CDC) to promote the UNIVERSAL DATA COLLECTION (UDC) program and with a manufacturer to establish MY LIFE/OUR FUTURE, by which all hemophiliacs and many carriers could be genotyped to find the cause of their hemophilia. Many important scientific discoveries were made through these two programs.

Through all this, Val remained a kind, compassionate man, a mentor to many of the young persons he worked with at Camp Hemotion.

Val’s presence loomed large in the hemophilia community, and he will be greatly missed.

We extend our condolences to his wife Robin and son Langston.

Dr. Glenn Pierce

Val and I first got to know one another 30 years ago, when we were opposing one another in an election for president of the National Hemophilia Foundation (US). I was fighting for HIV/AIDS advocacy from within, from the Board, and Val was part of a more activist group that was impatient the NHF wasn’t doing enough, fast enough. He and I came together, realized our goals were the same, and also recognized we were so much stronger together. We teamed up, he became Chair of the Board and I became the President. Together, with many others we recruited, we changed the NHF to an organization that needed to be accountable and lead on HIV/AIDS advocacy. Val subsequently went to Washington DC where he led the charge to get the Ricky Ray bill passed, and then worked on making industry accountable. While the financial accountability was important, the highest priority was to understand how this iatrogenic genocide materialized, and what must be done to prevent such a calamity from ever happening again. Val was at the forefront of this fight, which culminated in a report from the National Institute of Medicine on all the failures across the board that allowed HIV (and HCV) to infiltrate the blood supply. This is a legacy that endures today.

Val went on to advocate for many of the health and financial issues facing the bleeding disorders community, and our paths crossed often, nationally and internationally. In 2008, he was selected to lead the NHF as CEO and for over 10 years, took our organization to new levels of programming and service to the community. It was a far cry from the organization he and I led in 1992, and now grew and thrived under his leadership. He absolutely loved his job representing his community on many stages within the healthcare, advocacy and political ecosystems.

While Val retired from NHF a couple of years ago, his health began to catch up to him, as it has for all fighting the good fight beginning in the decades before HIV distributed its poison. It isn’t easy living with severe hemophilia, even tougher compounded by infections and all the sequelae from uncontrolled bleeding before adequate treatment was available. But Val never let the hemophilia slow him down. In fact, it sped him up- the urgency of the fight was always clear and present in Val’s mind and his actions.
Our hearts go out to Val’s family, who shared this remarkable man with a community that he left a lasting impact upon. I’ve lost a brother- we’ve all lost a brother- within the bleeding disorders community, but the activism, hope and drive he stood for is preserved within the many individuals Val touched along the way.

Dr. Judith Baker

Dear Western States/Region IX HTC Colleagues,

With heavy hearts we mourn the passing on December 30th, of Val Bias, visionary hemophilia leader extraordinaire – advocating to strengthen peoples’ skills and organizations’ services locally, statewide, regionally, nationally, internationally throughout his life.

Yes, Val was the CEO of the National Hemophilia Foundation from 2008 – 2019. But Val was also a treasured friend with a booming welcoming laugh. A colleague with sharp insights. And an inspiring mentor to countless kids, teens, and even adults — in California his home for many years from age 19 – and beyond. Director of Camp Hemotion, CEO of the Hemophilia Council of California, Board member and President of the Northern California Hemophilia Foundation … are just a few of the organizations in our region that grew stronger with Val’s devotion to growth and sustainability through partnership and next skill building.

Val lived with hemophilia and its complications. His work is sung by many:

  • UCSF Hemophilia Treatment Center: Click here for a facebook post from Marion Koerper, MD, Founding Director.
  • National Hemophilia Foundation: For NHF’s statement click here. And here for NHF’s 2019 tribute to Val.
  • World Federation of Haemophilia: Click here for a condolence article, here for statements from WFH leaders, and a tribute from WFH Vice President, Medical Glenn Pierce.

See Val here describe how AIDS affected hemophilia. This is part of the National AIDS Memorial HIV Story Project’s 2016 “Unsung Heros – The Hemophilia Community”. Click here for all hemophilia videos; many from our region.

Condolences and communications may be sent to: communications@hemophilia.org.

As we collaborate to strengthen access to HTC care, thank you for taking a minute to note Val’s lifelong commitments to the hemophilia community. He was a staunch HTC advocate. While we are devastated, Val’s vision remains alive in our work.

Hemophilia Council of California

Val Bias was a shining light in the hemophilia and bleeding disorders community. We at the Hemophilia Council of California are saddened by his sudden passing on December 30, 2021 in Buffalo, New York.

As a child, Val was diagnosed with severe hemophilia B in New York State. Val moved to the Bay Area in Northern California as a young adult, where he later became the program director of the Hemophilia Foundation of Northern California (HFNC)’s Camp Hemotion and held leadership positions at HFNC.

Val began his career as an advocate at the national level helping to pass the Ricky Ray Act of 1998, which provided funding for compassionate care relief for those in the bleeding disorders community impacted by the HIV/AIDS crisis. Kate Muir remembers-

“[Val] worked tirelessly to unite the shared challenges and isolation of living with HIV/AIDS amongst the hemophilia community in California; desperately in need of resources, support, as well as timely and accurate information.”

Later on in his career, Val worked with the National AIDS Memorial Grove in Golden Gate Park in San Francisco to continue this work by establishing the Hemophilia Memorial Circle, which memorializes all those in the hemophilia community lost to AIDS.

Val became the Executive Director of the Hemophilia Council of CA (HCC) in 2003, and at that time-

“Val recognized a unique opportunity in the state of California to reinforce […] the HCC’s role as a community based advocacy organization, with strong regional representation to influence health care policy at the state level.” –Kate Muir

Under Val’s leadership until 2008, HCC continued to grow and expand its advocacy and collaborations with bleeding disorders stakeholders. He was beloved in the California State Capitol, so when a State budget crisis threatened HCC’s grant funding from the Department of Mental Health and the Office of AIDS, Val successfully advocated to keep the funding for an additional two years so that the HCC would have sufficient time to transition.

While keeping HCC strong, Val used his experience and passion for working with the youth to create HCC’s influential Future Leaders Program, which has since trained generations of youth in bleeding disorders advocacy.

Another one of Val’s accomplishments that endures to this day are HCC’s quarterly Health Care Access Forums, founded one year after Val took the helm as Executive Director of HCC. Dr. Judith Baker recalls-

“Val intentionally extended the team approach to advocacy to commercial pharmacy stakeholders [and manufacturers] when he created the HCC’s Forum […]. Factor costs to Medi-Cal, CCS and GHPP were spiraling, threatening the continued unlimited access to factor. The Hemophilia community needed to show State officials that they could help reign in the costs. Be part of the solution.

The State proposed a new factor reimbursement rate, set to go live on July 1, 2007. Quarterly Forum meetings were a space where all stakeholders, including State Health Department leaders, could regularly interact, publicly discuss problems driving the spiraling costs and their potential solutions, get questions answered, quell rumors, and show the impact of the new reimbursement rate. The State hoped to reduce factor costs by $2-4 million in the first year. We succeeded. Factor costs dropped by $21 million in year 1.”

Those Forums started by Val have continued to be a valuable tool of collaboration through today. Additionally, the HCC Health Policy Summits Val instituted have been instrumental in fostering dialogue with stakeholders about strategies and action plans to ensure continued access to quality, patient-centered health care in California for people with bleeding disorders.

Perhaps Val’s most critical California legislative advocacy work was helping to write the Standards for the Delivery of Clotting Factor Statute: AB 389 (Mitchell), which remains law in California today. That statute maintains a high degree of protection for patients so that factor will be packaged properly for delivery and that patients will have access to their pharmacies at all times to ensure compliance and safety. That effort took three years to go from idea to a signed statute, and Val had already been hired to work at NHF when it was passed, but HCC invited him back to receive an award for his important work.

HCC continues as a successful non-profit advocating for the bleeding disorders community today because of Val’s leadership and advocacy work!

We extend our deep condolences to his wife Robin and son Langston on his passing.

A celebration of Val’s life will be held at the Hemophilia Circle in the National AIDS Memorial Grove in Golden Gate Park in San Francisco in Spring 2022; details to follow.

Donations can be made in Val’s name to VAL BIAS TRIBUTE at the National AIDS Memorial website www.aidsmemorial.org

Visit our website to view additional remembrances from Dana Francis, MSW and Judith Baker, DrPH, MHSA

Lynne Kinst
Executive Director
Hemophilia Council of California

If by Chance, by Bobby Wiseman

A couple of weeks ago, I received a series of calls, text messages regarding the transition of Val. Shortly before these communications I received calls, text messages of the passing of the passing of the Episcopal Assistant to the Presiding Prelate of TFAM (The Fellowship of Affirming Ministries). At the time, was on a cross-county road trip with my brother/road-dog, his kiddos (five boys ages 5 – 12) and in the process of checking in a hotel to “escape” a freak winter storm.

I returned a couple of phone calls relating to both transitions. A few folks that I spoke with from the community stated something to the effect of “everyone is worried about you…” My reply was, “I am fine”. Yes, I had a moment of sadness, sorrow balanced by comfort. Now, many know that I have known Val since I was 5 years old. Yes, I met him at summer camp – Camp Hemotion. Yes, as I progressed in summer camp, both myself and Craig G. were the Junior Counselor for the 5-year-old boy cabin and Val was the Camp Director with Todd Smith. Have unique and fond memories of the ups and downs with the youngest boy cabin and getting tidbits of information, tools and techniques from Val.

These tools and techniques were concrete, yet at the same time very fluid. He showed in word, deed, and action how to apply the techniques and how to ebb and flow. As I grew up, Val was there both at camp and outside of camp in many, many different activities – bleeding disorders and non-bleeding disorders activities, events. He was keen on education, keen on speaking with BOTH those who agree AND disagree with a viewpoint and/or standpoint. In many conversations with Val, the key takeaway was that whatever challenge that you may have, do not let if define nor confine you. Do not be “so stuck” in the thought or practice that there is only one way to do something.

Yes, he was a father, husband, brother, cousin, god-parent. Yes, he was director, organizer, developer. Yes, he was a delegator. He knew that he could not do all things, so he delegated. Some of the “delegation” I had no clue how to do it or even where to start. When I would ask the “how to’s” he would give maybe one piece of information to ‘assist’ and gave me a deadline to report back on progress. In the process of reporting, the organized delegator asked key questions which forced me to think different, to look at situations from the context of a wide variety of folks, and provided me safe personal and professional development. Oh yes, he did have that voice of chastisement balanced by love, admiration, respect, and moreover trust.

I have many memories of meetings and phone calls where it took a long, long time to reach agreement, consensus. I recall many conversations where Val would say, “Bobby, can you please talk with so and so..” It was NOT because he did NOT have the ability, yet (looking back) I believe it was his way of honing my skills. It was an active way, that he was showing me, to have all voices heard. And not only heard, yet INCLUDED. I can remember many late-night conversations at camp, retreats where the language was ummm, interesting and funny as all get out. I can remember despite joint related issues; Val would drop to the floor and UNDER a chair when “the bat” would fly about in the dining hall during our nightly meeting. I can recall campfires, HFNC Board meetings, cookouts at the Bias home. I can recall many, many things about Val.

Yes, he was steadfast in “getting the work done”. He was steadfast in making trailblazing decisions and actions for the local community (Nor Cal), California, and the national and international bleeding disorders community. He was NOT one that lavished in the limelight, in my opinion. He was an advocate that you DO NOT need to be in the limelight in order to do the work. He propelled so, so many folks in private one-to-one conversations. Yes, he loved enjoyed music, living life. I can recall so many conversations regarding family, raising a family. I fondly remember the look on Robin and Val’s face when Langston came home. I recall many moments when I wanted to cuss him royally out. And yes, there were times that we both did that!!! Not gonna lie about. I can recall when there were some significant health issues where I was on a death bed, and he was there; not just for me yet also my Mama. I can recall talking food recipes, I can recall him telling me to be true to myself and NOT to let the opinions of others or even the opinions of myself limit or hamper me. I remember many conversations talking about how to “be in a room with folks that he knew did not like nor appreciate his viewpoint(s), action(s), etc.

I have seen many posts about the life and legacy of Val. I have seen many posts where the poster indicated the private one to one seeds of knowledge and individualized attention. I have seen the posts from many who spoke of his tenancy, his laughter, his resiliency. I have seen many posts of his ability to take the time with ALL. Not because of title, connection, yet because he valued the person for the person.

What has hit and settled in my brain and heart regarding the transition of Val.

If by chance

If by chance, I have the opportunity to sit and talk with someone, I will
If by chance, I can make an impact on community, I will
If by chance, I can pour into others, I will
If by chance, I can tell my own truth, I will
If by chance, I can be the best me, I will
If by chance, I can be whatever I choose or want to be, I will
If by chance, I can develop a program or service that all do not see the value in, I will
If by chance, I can enjoy life to it’s fullest while doing no harm, I will
If by chance, I can be a student, I will
If by chance, I can be a teacher, I will
If by chance, I can learn from my mistakes, I will
If by chance, I can provide opportunity for learning, I will
If by chance, I can find commonality in the midst of chaos, I will
If by chance, I can give and show love, I will
If by chance, I can understand what the real heart of what is being talked about, I will
If by chance, I can be accountable and responsible, I will
If by chance, I can be a person of faithful relationship, I will
If by chance, I can try my best and say where I was wrong, I will
If by chance, I do not know the answer or solution I can and will tell the folks I don’t know what the next steps are, I will
If by chance, I need to apologize, I will
If by chance, I want to live my best life as I define it, I will
If by chance, I can make a difference in the life of one’s own self, I will
If by chance, I can smile in the midst of sadness, I will
If by chance, I can laugh, I will
If by chance, I can dance like there is no tomorrow, I will
If by chance, I can live out my desires and dreams, I will
If by chance, I want to make an impact, I will

I had the chance to experience and witness the awesome friendship, love, professionalism of Val. If by chance, I can continue actively living out the vision that has been poured into me, I will. Yes, there is a loss with Val no longer physically present with us. However, the seeds have been planted for so many people to live out their “if I can” not just from Val, yet from many, many people.

Rest well social-justice warrior. Rest well knowing that what you have built and built upon will continue. Rest well and know that “if by chance” will continue!!!

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Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 813-748-7226
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670

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