Gateway Connection – Winter 2021

Missouri Advocacy Day

Due to the ongoing COVID-19 Pandemic, Missouri Advocate Day will be entirely virtual this year. This will include virtual training and virtual meetings with legislators. While our virtual Advocacy Day is limited to residents of the State of Missouri, all community members are invited to join us for our virtual Advocacy training.

Advocacy Training: Wednesday, March 10th 7:00pm

Advocacy Day: Thursday, March 11th, meeting times TBD

Also in this issue:

A message from the Executive Director, Bridget Tyrey
Calendar of Events
Fall Membership Meeting
Ugly Sweater Holiday Cookie Extravaganza
Young Adult Virtual Events
GHA’s Academic Scholarship Information
Thanks to our Volunteers!
Holiday Trivia Night Fundraiser
Ending the Cycle of Financial Struggle
About Brittany Slossberg
Your Guide to Strength Training
Donations, Honorariums, and Memorials
GHA’s Adult Retreat

BCDI is Taking A Knee For DVT

Help us spread awareness about Thrombosis, Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE).

Thrombosis is the development of a blood clot!

DVT is a blood clot deep in the veins, usually found in the lower leg or groin.

PE is when a clot breaks off and travels to the lungs.

These conditions kill more people each year than AIDS, breast cancer and car crashes combined.

The Man Behind the Science

At a time when health care is changing, The Bleeding & Clotting Disorders Institute in Peoria is assisting patients in making the transition while providing expert, comprehensivecare to increase their quality of life.

Delivering Personalized Health Care

Founded April 5, 2010, The Bleeding & Clotting Disorders Institute exists to provide professional, family-oriented care for patients experiencing bleeding, clotting, and other blood disorders. The nonprofit multidisciplinary evaluation, treatment, and research facility provides health care services and education, coordinating care in collaboration with health care professionals to help patients experience life to its fullest.

“We do everything to ensure the best possible care for our patients,” says Dr. Michael Tarantino, Medical Director and Founder of BCDI. “BCDI is the only recognized bleeding and clotting disorders center outside of Cook County. For this reason, part of our mission is to reach out to under-served areas in Illinois through our awareness campaign. Twice a month we pack up our clinic and visit cities and towns as far north as Rockford and as far south as Springfield to provide treatment and education. We are working on a telemedicine program in the southern part of the state. We have a job to do, and BCDI will do what it takes to bring healing and education to people across the state.”

Dawning of an Era

he importance of having bleeding and clotting disorder clinics similar to BCDI in the United States was first realized in the 1960’s when Dr. Judith Graham Pool, an American scientist and professor of Medicine at Stanford University, accidentally discovered how to isolate the missing protein that causes blood to clot in hemophilia patients. Hemophilia is an inherited disease caused by a deficiency in one of the proteins needed for blood to clot, resulting in prolonged bleeding into the joints, muscles, or body organs.

This accidental discovery led to a new era of physician treatment of patients with the disease. The availability of the missing clotting factor has enabled hemophiliacs to treat themselves at home with injections, reducing both the length of hospitalization and the cost of treatment.

“Before Dr. Pool’s discovery, if patients with hemophilia suffered a serious hemorrhage, and if they survived, they would usually remain in the hospital for a couple of weeks or more,” says Dr. Tarantino. “Some patients would experience traction, lose muscle mass, and become disabled. Dr. Pool’s discovery led to the existence of comprehensive care centers of excellence, like BCDI. Today, these care centers exist to empower patients with hemophilia to take care of themselves.”

In the late 1970s to mid 1980s, clotting factor concentrates became contaminated with HIV. In response, the Maternal and Child Health Bureau (MCHB) and the Centers for Disease Control and Prevention (CDC) set up programs to administer and monitor the safety of clotting treatment through Comprehensive Care Clinics.

Following the contamination of the clotting factors, the inception of Hemophilia Treatment Centers of Excellence took place. BCDI is one of 143 federally recognized Hemophilia Treatment Centers of Excellence in the country, and the only one in downstate Illinois.

For more information on hemophilia, visit visit www.hemophilia.org.

Experiencing Expert Care

BCDI provides expert, state-of-the-art care, collaborating with other bleeding and clotting disorder centers to develop the best practices to markedly enhance patient treatment. “We have networks of doctors in the country that focus on treating blood disorders even more rare than hemophilia in order to administer the best care possible,” explains Dr. Tarantino. “Health care is a right, but it is also a commodity. Patients must go to a place where the practitioners and staff are specially trained experts.”

When it comes to delivering expert care to patients with rare blood disorders, BCDI continually surpasses expectations. An award winning, nationally recognized hematologist appointed as a representative on the board of directors of the Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation (NHF), Dr. Tarantino’s work to combat hemophilia, Idiopathic Thrombocytopenic Purpura (ITP) and other blood disorders has led to advanced research on behalf of patients living with these diseases.

One of Dr. Tarantino’s signature contributions to the hemophilia community was his role as lead investigator for the clinical development of the first fully synthetic blood factor product. Today, it is the primary product used to treat and prevent bleeding in hemophilia patients. In honor of his contributions to patients with this disease, Dr. Tarantino was awarded the highest honor in the bleeding disorders community: the prestigious Kenneth Brinkhous Physician of the Year Award, in 2012.

Additionally, BCDI delivers expert care by striving to remain on the cutting edge of ITP research and treatment. ITP is an acquired blood disorder that causes easy or excessive bruising and bleeding due to unusually low platelet levels.
Dr. Tarantino has been involved in treatment that increases platelet production in persons with ITP and has served as the lead investigator on an international study to help children with the disease. In addition, Dr. Tarantino is collaborating with Dr. Greg Gerstner to form the first ITP comprehensive care clinic in the country.

Having published between 40 and 50 articles related to ITP in medical journals and having given numerous presentations on the disorder, Dr. Tarantino says BCDI has treated ITP patients across the country, even as far away as California, and partners closely with the Platelet Disorders Support Association (PDSA) and has served on PDSA’s Medical Advisory Board for the past decade. For more information, visit www.pdsa.org.

As experts in their field, the physicians and staff at BCDI are heavily involved with community education. For the past five years, BCDI has participated in the Women’s Lifestyle Show and other area conventions to promote awareness of von Willebrand Disease (VWD) and other bleeding disorders in women.

According to Dr. Tarantino: “People with VWD take longer to stop bleeding than normal. Heavy menstrual bleeding is one of the symptoms. At BCDI, we work with women’s gynecologists to avoid unnecessary surgery to treat heavy menstrual bleeding.”

Tested and Proven

BCDI’s stellar reputation would not be possible without the help of trained medical professionals on staff. “The National Hemophilia Foundation’s Medical Advisory Board uses guidelines for training purposes as well as for specific credentials that bleeding disorder centers’ staff and physicians must have in order to treat patients,” explains Dr. Tarantino.

Dr. Tarantino has extensive training in the specialty of bleeding and clotting disorders. He completed a fellowship in Pediatric Hematology and Oncology at the University of Wisconsin in 1993 and is currently a professor of Pediatrics and Medicine at the University of Illinois College of Medicine in Peoria. Today, he has 25 years of experience caring for children and adults with bleeding and clotting disorders. BCDI’s 20 plus-member staff encompasses 250 years cumulative experience in bleeding and clotting disorders.

As health care continues to move forward with the advent of the Affordable Care Act, nurse coordinators and medical social workers help patients navigate through the recent changes in Medicaid, changes implemented by the Affordable Care Act and similar reforms taking place in the private insurance market.

“With the changing health care environment, I think people really need to exercise caution about which health care plan they choose and look carefully at the qualifications of different physicians,” says Dr. Tarantino. “BCDI is here to help patients in every way possible. Whether transitioning to a more affordable health care plan, finding the right specialist or reaching out to the community, we make patients’ quality of life our number one priority.”

Michael D. Tarantino, MD, completed his residency in pediatrics at the University of Arizona Health Sciences Center in 1990. He is currently a professor of Pediatrics and Medicine at the University of Illinois College of Medicine. He is board-certified in Pediatric Hematology/Oncology and brings 25 years of experience caring for children and adults with bleeding and clotting disorders.

For more information on the Bleeding & Clotting Disorders Institute, visit www.ilbcdi.org or call (309) 692-5337 or toll free at (877) 335-2234. Office hours are from 8 a.m.– 4 p.m. Monday through Friday. BCDI is located at 6811 North Knoxville, Peoria, IL

He Doesn’t Just Read the Literature, He Writes It

Recognized with distinction, Dr. Michael Tarantino received the University of Illinois College of Medicine Alpha Omega Alpha Teaching Award at the honors banquet held at the OSF Jump Training Center on May 1st.

Dr. Tarantino received accolades for his mentorship and numerous contributions to the science of treating bleeding and clotting disorder patients, noted around the world. He doesn’t just read the literature, he writes it.

Way to make us proud – YET AGAIN!

BCDI Attends NHF’s Annual Meeting

BCDI team members attended the National Hemophilia Foundation’s 66th Annual Meeting in Washington, D.C.

Among the many things we are proud of, BCDI-led by medical director Dr. Michael Tarantino-continuously plays an instrumental role in helping to educate legislators about the issues facing the bleeding and clotting disorders community. We strive to make significant contributions to clinical research shaping the treatments of today and helping to work towards a bleed free tomorrow.

(From left to right) Kollet Koulianos, MBA, Administrator; Shanna Beard, MA, LPC, NCC, Licensed Professional Counselor & Social Services Coordinator; Michael D. Tarantino, MD, Medical & Research Director; Jeanette Bredeman, RN, BSN, Nurse Coordinator & Angie Riedel, Outreach Coordinator

Dr. Tarantino Recognized for Outstanding Healthcare Service

Dr. Tarantino was presented the “Walk in Our Shoes Award for Outstanding Healthcare Service Contribution” on Sunday, August 23rd from the Bleeding Disorders Alliance of Illinois.

During the award ceremony in Chicago, Mona Towner, BDAI Board President, stated, “If we did not have dedicated, caring and knowledgeable healthcare providers, the bleeding disorders community would be nowhere. We are pleased to honor Dr. Michael Tarantino with this award.”

Way to go Dr. Tarantino!

The 2014 Annual Bleeding Disorders Advocacy Award

We packed the Five Points banquet room with over 300 guests. Some highlights of the evening were as follows:

Dr. Tarantino and BCDI’s Administrator, Kollet Koulianos, together with Bob Robinson, the President of the Bleeding Disorders Alliance of Illinois, presented State Representative Mike Unes with the annual Bleeding Disorders Advocacy Award.

Megan Schwerman, one of three scholarship award recipients, received a standing ovation for her heartfelt testimonial about what the scholarship means to and her family.

Shelli Dankoff McClellan was a most entertaining host. She kept the crowd engaged by poking fun at some of the questions and answers during the trivia game.

The silent auction was bustling with friendly competition for some of the enticing baskets full of generously donated gifts from local vendors and beyond.

The three raffle winners were thrilled to receive their raffle prizes which were lavishly donated by Bremer Jewelry and IT360. And finally, the big hit of the evening, pulled off with much aplomb by BCDI Business Administrator, Kollet Koulianos, was the “Let’s Get Lei’d Game”; the winner received an LCD television. Hope to see all of you back in 2015!

Dr. Tarantino Pedals for Platelets through Tucson Arizona

Dr. Michael Tarantino is recognized worldwide for his signal contributions to the bleeding and clotting disorders community. Such contributions include authoring well over 100 abstracts and publications, and playing a pivotal role as lead investigator on several research studies that have helped to shape care for the patients affected with bleeding and clotting disorders.

In his free time, Dr. Tarantino enjoys bicycling and has logged over 7,000 miles this year alone! His passions will come together in late November as Dr. Tarantino Pedals for Platelets through Tucson Arizona, competing in the El Tour De Tucson in an effort to help raise awareness and funding for the tens of thousands of people who are affected with ITP and other Platelet Disorders!

Please consider helping him meet his goal of raising $5,000 by making a tax deductible gift in his honor!

Dr. Michael Tarantino Presents in Hong Kong

Dr. Michael Tarantino, Medical Director of the Bleeding and Clotting Disorders Institute was invited to present “Every Bleed Counts: Preventing Joint Disease in Persons with Hemophilia” at the Inaugural Annual Meeting of the Hong Kong Society of Thrombosis and Hemostasis on February 21, 2014.

Dr. Tarantino also spoke to the team of Baxter Healthcare Hong Kong on the use of bypassing agents for persons with hemophilia and inhibitors.