Illinois HR 1 Implementation: Protecting Your Medicaid Coverage 

The second session will focus specifically on how Illinois plans to implement HR 1 Medicaid requirements and what those decisions will mean for bleeding disorder patients. 

Participants will learn what Illinois Medicaid may expect from patients in order to maintain coverage, what notices and requests for information to watch for, and what actions patients should take when they receive them. The discussion will include practical strategies for staying organized, responding to Medicaid requests, documenting information when needed, asking for help early, and reducing the risk of losing coverage because of missed paperwork or deadlines. 

Because access to consistent Medicaid coverage is especially important for people who depend on specialty providers, factor products, medications, infusion services, and comprehensive bleeding disorder care, this session will focus on practical steps patients and families can use to navigate the transition successfully. 

Together, these two sessions are designed to give the BDAI community both the knowledge and the tools needed to prepare for HR 1 implementation in Illinois and take an active role in protecting their health coverage. 

This event is presented in English with translation available in Spanish during the event. While both webinars present important information, you do not need to have been a part of the first webinar to gain valuable insight from this one.

Join BDAI as we celebrate Hispanic Heritage Month with our community. This is an afternoon and evening filled with connecting activities, education, and more, honoring our Hispanic bleeding disorders family.

This event is open to all members of the community. All education will be presented in Spanish.

Únete a la BDAI para celebrar el Mes de la Herencia Hispana junto a nuestra comunidad. Será una tarde y una noche repletas de actividades para fomentar los vínculos, sesiones formativas y mucho más, en homenaje a nuestra familia hispana de personas con trastornos hemorrágicos.

Este evento está abierto a todos los miembros de la comunidad. Todas las sesiones formativas se impartirán en español.

Reconnect with your inner child while picking apples with your BDAI family! BDAI is back at Windy Acres Farm for our annual Fall Family Fun.  This Community Connecting event is bigger than last year with opportunities to meet with our industry partners in a casual setting, along with a few amazing education sessions sprinkled throughout the day.  Don't forget the great raffle at the end of it!. The day will be packed with exciting activities like visiting the petting zoo, playing mini golf, and zooming down the zip lines. We can't wait to kick off this fall season together!

Preparing for HR 1: What Illinois Bleeding Disorder Patients Need to Know 

The Bleeding Disorders Alliance of Illinois (BDAI) is hosting a two-part educational series designed specifically for people with bleeding disorders and their families who rely on Medicaid coverage in Illinois. 

Major changes to Medicaid are coming under HR 1. While many of the requirements are established at the federal level, how patients experience these changes will depend greatly on how Illinois implements them. This series will help the BDAI community understand what is changing, what patients and families can do now to prepare, and what steps will be important for maintaining Medicaid coverage as the new requirements take effect. 

This webinar series is presented in English with translation offered in Spanish during the event.

Join your BDAI friends following the walk for an educational opportunity and a chance to rest and eat while learning about Hympavzi with our supporting partner Pfizer.

Join your BDAI friends following the walk for an educational opportunity and a chance to rest and eat while learning about with our supporting partner CSL Behring

Únete a tus amigos de la BDAI tras la marcha para disfrutar de una actividad educativa y de la oportunidad de descansar y comer mientras aprendes junto a nuestro socio colaborador, Sanofi. Este almuerzo se impartirá en español.

Join your BDAI friends following the walk for an educational opportunity and a chance to rest and eat while learning about with our supporting partner Sanofi. This luncheon is presented in Spanish.

2026 is already booked and we are READY for an amazing day of celebrating the bleeding disorders community and CRUSHING our 2025 fundraiser.

Want to get started early? Contact Kelsey kcunningham@bdai.org to start your team!

SAVE THE DATE !

Our third Community Circle event is coming up September 5th! These community connecting programs are organized and hosted by volunteers. These are intended as an additional connection point for support and relationship building for our community throughout Illinois.

This event is not financially supported by BDAI. — Each attendee will need to support their own purchase at each community circle event.

Join BDAI and our industry partner Takeda for an educational evening that helps support you on your bleeding disorders journey. This evening gives us the opportunity to learn more about von Willebrand disease and products available for treatment.

SAVE THE DATE !

Meet up with your old camp pals and reminisce about the good old days of Camp Warren Jyrch.

This is an afternoon of connecting, brief education over lunch, and hanging out doing outdoor activities at THE FORGE in LeMont. While this event is geared towards our previous campers, all are welcome. Not all activities are suitable for all ages.

This event requires a $10.00 deposit with registration. This deposit is refundable upon your arrival at the event on August 22nd. It will be forfeited if you register and do not attend Camp Reunion.

*Spots will be limited, please plan accordingly, registration will close August 18th at 11:59pm!

This event has been postponed. We can’t wait to serve our community when it suits them best!

Join BDAI and our industry partner Pfizer as we learn more about Understanding Hympavzi.

This general public fundraising event brings the fun and entertainment for all with Hamburger Mary’s wildly attending and long talked about HAMBINGO.

Come play drag queen–hosted BINGO and support Bleeding Disorders Alliance Illinois! $20 suggested donation gets you a card + a shot at prizes. Food, drinks, and fun all night.

Reservation required at www.chicago.hamburgermarys.com— book a 6:00, 6:15, or 6:30 PM slot (before bingo starts at 7). Showing up without one isn't guaranteed a seat!

Go to their website link from above

click RESERVATIONS at the top bar

search for August 5th

times available: 6:00, 6:15, 6:30

Have a memorable time and raise some funds for BDAI while you do it, See you there!

Our second Community Circle event is coming up July 18th! Join our board member extraordinaire Isabel at Melt ‘n’ Dip Creperie. It is sure to be a good time!

These community connecting programs are organized and hosted by volunteers. These are intended as an additional connection point for support and relationship building for our community throughout Illinois.

Contact Kelsey if you are interested in hosting an event kcunningham@bdai.org

Join BDAI and our industry partner Genentech as we discuss Caregiver burnout over dinner. Don’t miss our first event of July! We are excited to see you after a few weeks apart!

Learn to advocate and be the voice for your bleeding disorder from the comfort of your own house.

Join BDAI teens (ages 13-18) with other powerful advocates as we embark on how to share your stories, what every day advocacy looks like and why it is important. Don’t worry this will be mixed with lots of fun.

The retreat kicks off with a box sent your way with goodies, and a door dash gift card for lunch. Following the retreat, be on the lookout for a cash stipend for attending!

*Spots are limited! Register TODAY!

Join BDAI and our industry partner CSL Behring for an afternoon of fun, hands on education, and a taco food truck in the park. This event is sure to fill up!

Brand new to BDAI, we are excited to bring community support across the state with our volunteer led Community Circle events.

Find out more about our first one and what BDAI Community Circle events are all about on the community circle page. That will give you the link to register too!

Join BDAI and Dr. Daisy Cortes as we navigate thriving around Hemophilia B. This virtual education is supported in partnership with Novo Nordisk.

Listen to fellow bleeding disorders community peers as they discuss their journeys on Altuviiio. This evening at Wildfire is supported by Sanofi.

Bleeding Disorders Alliance Illinois has partnered with Hemophilia Foundation of Michigan (HFM) to bring the Ruby Connection program to Illinois. Adult women in the bleeding disorders community will have the opportunity to come together for online social experiences that include an educational speaker or activity while connecting with other women in the community. The group is open to women affected by a bleeding disorder or involved in the bleeding disorder community.

Register to join Genny Moore & Mayra Cantu on Thursday, June 4th at 7pm CT for BDAI’s virtual women’s group. This evening will bring in Rick Starks to show us some Tai Chi and discuss the importance of movement, while also being safe! The Ruby Connection Program provides a space for women affected by bleeding disorders or involved in the bleeding disorders community to connect, learn, and socialize.

For attendees who RSVP at least three days in advance, actively participate, and have their cameras on during the session, a meal reimbursement gift card will be sent following the event.

BDAI is excited to announce a community fundraiser! On May 23rd, catch the Chicago Fire Soccer Game; and when you purchase your tickets through the link below, you're directly supporting BDAI. Every ticket comes with an awesome jersey and puts $5 back into our community.

Spread the word with your friends, family, neighbors, and coworkers. Let's pack our section and make it the loudest one in the stadium! Note that this is an open public event, not a staffed BDAI event.

Hay dos oportunidades para participar en esta formación virtual sobre el agotamiento de los cuidadores organizada por Genentech. Inscríbete a continuación en el evento del 6 de mayo. O bien, inscríbete en el evento del 7 de mayo, que comienza a las 8:30 CST, a través de la Fundación de Hemofilia del Sur de California.

A day of adventure and memories are made with BDAI at our Family Camp! BDAI is excited to bring in Madonna McGuire Smith with TREE into Illinois to help host our Family Camp.

Madonna McGuire Smith is currently the Executive Director of Pacific Northwest Bleeding Disorders (PWNBD), Director of the YETI (Youth Effectively Transitioning to Independence) Conference and Camp Director of PNWBD bleeding disorder camp at Camp Tapawingo. Madonna has worked in bleeding disorders since 2009 serving as Development-Events Director for PNWBD and before that was Development Director at Western Pennsylvania Bleeding Disorders Foundation (WPBDF). Prior to working in bleeding disorders, Madonna worked in agricultural development internationally, living in Bulgaria for three years, where she was instrumental in creating a grain marketing system for the country after the fall of communism. She previously served as a high school and middle school teacher and coach. Madonna received her Bachelor’s Degree in Social Science/Secondary Education with a PE/Coaching Minor from the University of Northern Iowa. She went on to earn her Master’s of Public Administration from Iowa State University. Madonna’s husband and three oldest children have von Willebrand Disease and her youngest son, adopted from China in 2018, has severe Hemophilia A.

Help BDAI bring all the fanfare and excitement to our Family Camp at the Elk Grove Village Community Center. Enjoy the opportunity to attend an infusion clinic, participate in some camp activities and grow your family’s independence and expertise with a bleeding disorder on April 25th in Elk Grove Village.

Únase a BDAI y a nuestro socio Genentech para disfrutar de una velada educativa y distendida. Esta oportunidad se presenta en español.

Join BDAI and our partner Genentech for a lighthearted educational evening. This opportunity is presented in Spanish.

Register Here: cena y educación con Genentech

Join your favorite bleeding disorders community as well come together with Sanofi in celebration of World Hemophilia Day.

We will doing a goal setting activity with Sanofi following our dinner at Italian Village Restaurant.