Events

Oct 22

Beyond Trough Levels: Taking A Closer Look at How to Evaluate Hemophilia B

Location: Mary Jane Burgers & Brew
102 N. Jackson St., Perryville, MO 63775
7:00 PM

Ever wonder why Hemophilia B patients sometimes bleed with relatively high trough levels and conversely don’t always bleed with lower trough levels? To answer this, it is important to understand that Factor VIII and Factor IX work differently in the body. Hence the differences between Hemophilia A vs. Hemophilia B. Factor VIII naturally stays within the bloodstream, while Factor IX also goes outside the bloodstream by traveling through the walls of blood vessels. Trough levels will only identify factor that is in the bloodstream. That’s why for Hemophilia B, just measuring trough levels may not tell the full story of what your factor replacement is doing and you may need more information. RSVP to jmcnamee@gatewayhemophilia.org or 314-482-5973.    Event Flyer

Sponsored by:

Nov 02

Trivia Night Fundraiser

Location: The Pavilion at Lemay
305 Gregg Road (In Jefferson Barracks Park) St. Louis, MO 63125
7:00 p.m. (doors open at 6:00)

Advance registration and payment is REQUIRED (Event sells out)

$200 per table of eight ($25/person, individual seats are available)

 Beer, soda and snacks provided   

Questions, contact info@gatewayhemophilia.org or call (314) 482-5973. Event Flyer!

Register here!

Nov 08-10

Gettin’ in the Game Junior National Championship

GHA has been invited to send two individuals with a bleeding disorder between the ages of 7-18 to the Gettin’ in the Game event which will take place November 8-10, in Phoenix, AZ. The event will include competitions in baseball, golf and swimming. Selected nominees will receive hotel and airfare for themselves and one parent or guardian. Throughout the weekend, participants will have the opportunity to attend educational sessions to learn more about bleeding disorders and the importance of physical fitness and healthy lifestyles. Participants will also learn the fundamentals of golf, baseball, and swimming, proper stretching techniques, and the importance of safety on and off the field.

To be eligible for nomination by GHA, participants must have a bleeding disorder, be between the ages of 7-18, and live in the GHA service area (i.e. southern Illinois, eastern Missouri). Applications due July 30, 2019. For more information click here.

Nov 15-17

NOW Conference

 

NOW is a national educational conference for individuals and families who are living with this chronic disorder. It is a forum to learn about new medical advances, to gain tools that can help you better manage von Willebrand Disease (VWD), and to share with others facing the same or similar challenges.  We will bring expert healthcare professionals who can best address the issues unique to VWD. With funding by a grant from CSL Behring, the Arizona Hemophilia Association is excited to organize this national conference focused specifically on von Willebrand Disease. For more info click here.

Nov 16

‘Tis The Season To Give Back’

Location: Arnold Food Pantry
2024 Key West Drive, Arnold, MO 63010
10:00 a.m. to 12:00 p.m.

GHA Gives Back!

Join us for GHA’s annual day to ‘give back”

Volunteers will be helping to sort, process and pack the thousands of donations from the Scouting For Food event that day. Lunch will be provided. Event Flyer!

RSVP by November 13th to 314-482-5973 or jmcnamee@gatewayhemophilia.org

Dec 15

GHA Holiday Party

Location: The Magic House
516 S. Kirkwood Rd., St. Louis, MO 63122
6:00 PM to 8:00 PM

Magic House

Event Flyer

6:00 Welcome & Membership Meeting

6:30 Pictures with Santa

**Cookies and drinks provided**

RSVP Deadline December 5th to  jmcnamee@gatewayhemophilia.org or

(314) 482-5973

Dec 31

2020

Check out our events for 2020 below!

Feb 26-28

NHF’s Washington Days

Location: Hyatt Regency at Capitol Hill
400 New Jersey Ave NW, Washington DC 20001.

Make your voice be heard at NHF’s Washington Days

Join us to:

  • Meet face-to-face with lawmakers and staff who shape national healthcare policy
  • Become more informed on critical issues that affect your continued access to quality care

Learn effective grassroots advocacy techniques

GHA’s Scholarship is due January 1, 2020

Register Today with NHF

Mar 20-22

Regional Women’s Retreat

Location: Honey Creek Resort
12633 Resort Drive, Moravia, IA. 52571

Regional Women’s Retreat: Registration will be available after January 1, 2020

Apr 02-05

Youth Effectively Transitioning to Independence

Location: Camp Collins
3001 SE Oxbow Pkwy, Gresham, OR 97080

 

Application: Deadline is December 1, 2019

GHA is looking for a prominent leader that will be willing to contribute to the design and creation of teen programs in the future. The teen must live within the GHA service area, be ages 14-20 years old, and able to attend the YETI conference April 2- 5, 2020. YETI will be held at Camp Collins.

Hemophilia Foundation of Oregon (HFO) created the YETI conference to help bleeding disorder organizations work to transition teens from living in their parents’ home to successfully living a life on their own after high school.

Teens must arrive in Portland by 3 p.m. on the 2nd and cannot depart from Portland until after 1 p.m. on the 5th. The teen will travel with either a staff member or volunteer from GHA round-trip, no one under 18 should be flying alone to and from YETI.

Apr 23-26

HFA Symposium

Symposium is a family-friendly conference where topics that affect the entire family living with a bleeding disorder are addressed.  HFA understands that bleeding disorders are not a one size fits all medical condition. Dealing with or caring for a loved one with a bleeding disorder is a lifelong journey requiring diligence and flexibility in handling the challenges along the way. HFA Symposium offers community members the opportunity to learn and grow personally and collectively in becoming strong self-advocates! During our powerful sessions, community members can connect on a personal level with our presenters.

 

Click here to register with HFA or for more information.

 

May 02

Unite for Bleeding Disorders Walk & 5K

9:30 a.m. (registration opens at 8:30 a.m.)

 

Register Here!

The money raised at the walk will be used to assist our overall mission to find better treatments and cures for bleeding disorders and to prevent the complications of these disorders through education, awareness, advocacy and research. A 1 mile and 5K course are both offered. Chip timing available for the 5K at no additional charge.

Jun 03-06

Camp Notaclotamongus

Location: Camp Wyman
600 Kiwanis Drive, Eureka, MO 63025
12:00 p.m.

Camp Notaclotamongus provides campers with bleeding disorders a safe camping environment to learn about bleeding disorders, develop skills to care for themselves and to have fun! Camp offers the opportunity to meet new friends and participate in a variety of traditional camp activities, while developing future leaders of our camp and the community.

Camper Packing List

Camp Flyer

2020 Camp Theme – Pirates

Application deadline April 30

 

Jul 10-12

Family Education Weekend

Location: Doubletree Chesterfield
16625 Swingley Ridge Road, Chesterfield, Missouri, 63017

As an organization dedicated to the education and advocacy for our community, we decided 24 years ago to hold an annual education weekend for our members. At this conference we bring the members together and offer educational sessions on the treatment of bleeding disorders where they can have the opportunity to meet and network with other people who have the same disorder.

Please contact info@gatewayhemophilia.org with any questions.