Sporting Purple for Platelets!

BCDI Is supporting the Platelet Disorder Support Association (PDSA) in spreading awareness for Immune Thrombocytopenia (ITP) and other rare blood disorders by wearing Purple for Platelets.

Immune Thrombocytopenia (ITP) is a rare bleeding disorder characterized by a low amount of platelets in the blood. ITP is an autoimmune disease – in patients with ITP, a person’s own immune system creates antibodies that mark healthy platelets as ‘foreign substances’ and then mistakenly attack and destroy them. Patients with ITP have a tendency to bleed or bruise.

ITP Symptoms:

• Bleeding, which can include bruising
• Tiny red dots on the skin or mucous membranes
• Bleeding from the nose, mouth & gums, digestive or urinary tracts may occur
• In rare cases bleeding within the brain occurs

Click here to learn more about ITP

World Hemophilia Day

World Hemophilia Day 2017

April 17th is World Hemophilia Day! Today we come together to increase awareness and support for those affected by hemophilia and other inherited bleeding disorders.

How You Can Help

Help us ‘light up red’ your newsfeed and social media by sharing the graphic above with #WHD2017 to show the bleeding disorders community your support!

BCDI Trivia Night Update

BCDI Trivia Night was a huge success!

Thank you to everyone who participated in the event!

We would like to thank our sponsors:

Shire – Gold Sponsor

Novo Nordisk – Silver Sponsor

Pfizer – Silver Sponsor

Grifols – Silver Sponsor

Healthy Cells, Illinois Cancer Care, Clifton Larson Allen, Cefcu, BSM Developments, Create A Scene, Holiday Inn Hotel & Suites at Grand Prairie, Tracy Lee Photography, Katie Belle & the Belle Rangers, Matt Gullette, Brian Meginnes, Callender & Co, Kenneth Luthy, Colby Health Solutions, Vintage Optical, Tom & Diane Carrol, Betty Ekstrand and all of our other donors!

With the help of our sponsors, donors and participants, BCDI is able to make an impact in the lives of thousands of patients in Illinois affected by bleeding and clotting disorders through programs such as vital patient enhanced care, educational funding for scholarships, research advancements and more!

Together we can make strides towards helping all patients with bleeding and clotting disorders. Thank you for your continued support!

Dr. Roberts is published in Blood!

The Bleeding & Clotting Disorders Institute (BCDI) is proud to announce the publication of ‘Rapid Discrimination of the Phenotypic variants of von Willebrand Disease’ by Associate Medical Director, Dr. Jonathan Roberts, in Blood, the Official Journal of the American Society of Hematology. The article describes the development of the ELISA Assay that assists in rapid diagnosis of variant von Willebrand Disease.

Dr. Roberts collaborated with Dr. Montgomery, international thought leader in the field of VWD and hemophilia research at the BloodCenter of Wisconsin, to develop a novel ELISA-based von Willebrand Factor (VWF) multiplex activity assay to assign phenotypes among type 1 and 2 VWD and had an overall 88% accuracy rate. The findings show that the assay correlates with traditional VWF assays, but can provide a much more rapid diagnosis for variant VWD.

“This assay may provide a rapid diagnostic method for variant VWD, and change the way in which we currently evaluate patients with bleeding symptoms. Since it is a screening test, and has potential to lower costs, it may allow more patients to be screened for variant VWD,” said Dr. Jonathan Roberts, Associate Medical Director of the Bleeding & Clotting Disorders Institute and Assistant Professor of Pediatrics at the University of Illinois College of Medicine at Peoria.

The article was published in Blood 2016 volume 127, issue 20 and can be read online here: http://www.bloodjournal.org/content/127/20/2472.

Roberts JC, Morateck PA, Christopherson PA, Yan, K, Hoffmann RG, Gill JC, Montgomery RR, Zimmerman Program Investigators. Rapid Discrimination of the Phenotypic Variants of von Willebrand Disease. Blood 2016; 127(20):2472-2480.

About the Study

The ELISA assay was tested on 160 patients with type 2 VWD who were enrolled in the Zimmerman Program for Molecular and Clinical Biology of von Willebrand Disease. The assay successfully identified type 1C, 2A, 2B, 2M, 2N VWD with a 92.5% accuracy in the patient study cohort. The VWF multiplex activity assay can be useful for a same-day screening assay when considering the diagnosis of variant VWD in an individual.

About von Willebrand Disease

The most common inherited bleeding disorder is von Willebrand Disease (VWD), affecting up to 1% of the population. This disorder occurs equally in males and females. People who have VWD take longer to stop bleeding than normal. Von Willebrand factor (VWF) is a protein in the blood that has two important functions in helping blood to clot. VWF is the “glue” that helps platelets stick to the blood vessel wall at the site of injury. VWF binds to circulating clotting factor VIII and protects it from being broken down in the blood.

There are many subtypes of VWD:

• Type 1 – Reduced amount of von Willebrand factor (VWF) in blood
• Type 2A, 2B, 2M, and 2N – von Willebrand Factor (VWF) levels may be normal, but the VWF does not work properly
• Type 3 – Very little or no von Willebrand Factor (VWF) in the blood

Some symptoms of Von Willebrand Disease may include: easy bruising, frequent or excessive nosebleeds, heavy menstrual bleeding and heavy and prolonged bleeding after surgery, dental work, injury or childbirth.

About Dr. Jonathan Roberts

Dr. Roberts is the Associate Medical Director and Research Director at the Bleeding & Clotting Disorders Institute. He is board-certified in Pediatrics and Pediatric Hematology/Oncology. In addition, Dr. Roberts is an Assistant Professor of Pediatrics at the University of Illinois College at Medicine at Peoria.

Dr. Roberts has been recognized for his research with bleeding disorders. He has received multiple young investigator achievement awards from the American Society of Hematology (ASH) and International Society on Thrombosis and Haemostasis (ISTH) with his research featured at the 2014 Highlights of ASH. His research areas of interest are in advancing novel laboratory assay development to improve the diagnosis of von Willebrand Disease and to enhance individualized clinical management of hemophilia. Also, he was one of 32 competitively selected international applicants to attend the 2013 Hemophilia Academy in Edinburgh, Scotland. His clinical and translational research has been acknowledged by the National Hemophilia Foundation, the National Institutes of Health and other sponsors with a strong track record of obtaining grant funds.

Dr. Roberts graduated from the Southern Illinois School of Medicine in 2008 and went on to complete his internship and residency in Pediatrics at the University of Illinois College of Medicine at Peoria at OSF St. Francis Children’s Hospital in 2011. Dr. Roberts then completed a three-year fellowship in Pediatric Hematology/Oncology/Blood & Marrow Transplantation at the Medical College of Wisconsin/Children’s Hospital of Wisconsin in 2014.

Dr. Roberts already has authored or co-authored numerous peer-reviewed papers and abstracts.

Dr. Tarantino speaks at the Latin America Hemophilia Update Symposium

Dr. Tarantino was asked to speak at the Latin America Hemophilia Update symposium in Cancun, Mexico on the Diagnosis and Treatment of Acquired Hemophilia A!

Pictured: (L-R) Dr. Rosa Nieves from the Dominican Republic, Dr. Michael Tarantino, and Dr. Adriana Linares from Columbia.

Rep. Darin LaHood visits the Bleeding & Clotting Disorders Institute

Thank you to Rep. Darin LaHood for visiting the Bleeding & Clotting Disorders Institute! The congressman toured the BCDI facility and was educated about the services and programs BCDI offers to the bleeding and clotting disorders community. BCDI continues to carry on the mission of providing education to all persons, including our legislators, about how Hemophilia Treatment Centers (HTC) are the true medical home for patients and their families. Thank you, Rep. Darin LaHood, for your support!

Dr. Michael Tarantino is the first Peoria physician to be lead investigator and leading author on publication in The Lancet!

The Bleeding & Clotting Disorders Institute is excited to announce that Dr. Michael Tarantino, Medical Director, is the lead author on a recent publication in The Lancet. The Lancet published results from a Phase 3, randomized, double-blind, placebo-controlled study of Nplate^®immune thrombocytopenic purpura (ITP). This is the first time a Peoria physician has been lead investigator and lead author on an international clinical trial published in The Lancet.

“Children with ITP are at risk for serious bleeding events, which can be very frightening for both the children and their parents,” said Michael Tarantino, MD, Medical Director of The Bleeding and Clotting Disorders Institute and Professor of Pediatrics and Medicine at the University of Illinois College of Medicine at Peoria who practices at Children’s Hospital of Illinois.

ITP is a rare bleeding disorder characterized by a low amount of platelets in the blood, which are needed for clotting of the blood. In patients with ITP, a person’s own immune system creates antibodies that mark healthy platelets as “foreign substances” and then mistakenly attack and destroy them. As an autoimmune disease that results in the destruction of platelets, patients with ITP have a tendency to bleed or bruise. Dr. Tarantino has cared for hundreds of patients with ITP over the past 25 years. He is considered an international thought leader on diagnosis of and treatment for patients with ITP.

Results of the study showed 52% of patients saw an increase in platelet count, compared to a 10% increase in patients who received a placebo. More information on the study and findings can be found online via The Lancet website, and the information will be published in the journal’s print version of an upcoming issue. The international clinical trial was funded by Nplate’s^® manufacturer, Amgen. Read the abstract here!

Registration is Now Open!

Who: Bleeding disorder patients and their families

When: 10 AM Saturday, April 9th – 12 PM Sunday, April 10th

Where: Pere Marquette

501 Main St. Peoria IL, 61602

We are pleased to invite you to this year’s Statewide Education & Fun Weekend Program where we will be celebrating the theme ‘Welcoming ALL Bleeding Disorders.’ We have planned a full array of programs and presentations to arm you and your family with quality information, as well as a special event for Saturday night – which will give families and individuals time to reflect, remember and celebrate the Bleeding Disorders Community. We will be hosting some of the best educators and speakers in the state, and all breakout sessions aim to provide you with the necessary information to continue to receive top of the line treatment and care.

As in years past, BDAI will cover the cost of the hotel room for Saturday, April 9th as follows:

• Under 26 with a bleeding disorder still living at home – you and your immediate family* only
• Over 26 with a bleeding disorder living in your parental home or on your own – you and your significant other and children

*For the purposes of this meeting immediate family consists of your parents, siblings and any of your own children

For any additional guests attending, you will be asked to pay $25.00 per person per night for the hotel and $25.00 per person per day for food, payable when submitting your registration form. If the distance of your travel makes it difficult for you to arrive by the start of the program on Saturday (more than 150 miles one way), we do have rooms available for Friday evening (April 8th). Space is limited and these are on a first come, first serve basis. There is a space to indicate this request on the registration form.

DO NOT make reservations directly with the hotel. Simply complete the registration form and we will make the arrangements for you. One week before the event we will send a confirmation of your registration to be used upon check-in at the hotel. If you choose to extend your stay before arriving Saturday or staying after Sunday, please indicate this on your form and be aware you will be responsible for paying these additional charges. Each room will need to provide a credit card to the hotel for any incidental charges. Remember, we will pay for your Saturday night stay only, unless you are approved ahead of time for Friday night.

Non-Refundable Fee: There is a $50.00 fee required per family. This is for a family of up to 4 members. Larger families who will need larger accommodations (5-8 people) are asked to pay an $80.00 fee. Families with greater than 8 members attending will be responsible for a $125.00 fee. This must be included with your registration and is required for a reservation to be made.

There will be a very limited subsidy fund of $50.00 per family available on a first come, first serve basis. If this $50.00 subsidy is being applied towards the larger families, you are still responsible for the remaining fees. For example, if 8 members of your immediate family are attending and you request a $50.00 subsidy, then you will be responsible for the additional $30.00 of the $80.00 fee. If you should need to cancel and do so before March 21st, we will return your fee. Any cancellations after this date are non-refundable. The hotel will make every effort to provide refrigerators to hotel guests who require them for medicine storage.You must request a refrigerator when registering for this event.

Registration: Due to the fee requirement, registrations will ONLY be accepted via mail or fax.

Note: There will be childcare available for children ages 3-11. Parents will be required to sign a waiver at registration. Programming will be also scheduled for teens ages 12-17.

Attire: Please dress casually and comfortably. There will not be any requirements at the events or the activities for any type of formal dress.

If you have any questions, please email Adam Hii or call at (312) 427-1495. Thanks, and we look forward to seeing you in April!

Open Enrollment Begins Nov. 1st!

The time period where individuals can enroll in a health insurance plan through the Health Insurance Marketplace begins soon! Open enrollment for health care runs from November 1, 2015 – January 31, 2016. As always, BCDI is available to help answer any questions you may have. Please contact Shanna if you have any questions or concerns.