Events

Sep 04

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

Location: Ruth's Chris Steak House
315 Chestnut St., St. Louis, MO 63102
6:30 PM

 

This program is an educational program for individuals with a bleeding disorder and their families.

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.

Event Flyer

RSVP by September 1st to jmcnamee@gatewayhemophilia.org or 314-482-5973

Sponsored by:

Sep 19-22

Empowering Women with Bleeding and Clotting Disorders Annual Retreat

Location: Camp Allen in Navasota, Texas
18800 FM 362 Navasota, Texas 77868

The annual event will allow women and girls to participate in several educational sessions, entertaining and relaxing activities, all while enjoying time together and some well earned “me” time.  The weekend will provide the perfect opportunity for rekindling existing friendships as well as creating new ones.

Transportation, lodging, and meals are provided to all attendees.  The only cost to attendees is a small registration fee of $50 per person. Retreat registration will be open to females ages 18 and up who have been formally diagnosed with a bleeding or clotting disorder.  Camp registration will be open to females ages 12 – 17 who have been formally diagnosed with one of the following diagnoses: Von Willebrand’s Disorder, Congenital Thrombophilia, Hemophilia, Platelet Disorder, or Rare Bleeding Disorder.  All attendees must reside in one of the eight states in the Great Plains region (Texas, Louisiana, Oklahoma, Arkansas, Kansas, Missouri, Nebraska, Iowa).  The women’s retreat and girl’s camp are held concurrently on the same property however they will be at different locations on the property.  Girl’s camp attendees have the option to have a female parent or chaperone attend the women’s retreat.  Space is limited so we encourage all interested females to register early.  Once we reach our capacity, applicants will be put on a waiting list.

If you should require any additional information, or have any questions/concerns, please feel free to contact the names below.

Melissa Reifke                                                                         Hannah Somerville

Women’s Retreat Director                                                     Girl’s Camp Director

281-686-7020                                                                          316-665-9370

greatplainswwbcd@gmail.com                                              hdps3594@gmail.com

Sep 23

Tee off 4 Hemophilia

Location: The Legends
625 Legends Parkway Eureka, MO 63025
10:00 a.m. Registration / 11:00 a.m. Lunch / 12:00 p.m. Shotgun Start

This golf tournament is the main fundraiser supporting GHA activities.  The money raised at this tournament will be used to fund the programs and services throughout the year to people affected by bleeding disorders. GHA hosts conferences, funds research, supports advocacy, provides educational scholarships, emergency financial assistance, dental assistance, bleeding disorder camp, support groups for men, women, and teens, as well as a youth golf team. Click here for pricing and registration.

The Legends

SCHEDULE:

10:00 am…Registration & Putting Contest

11:00 am…Lunch by Pappy’s Smokehouse, Silent Auction & Driving Range

12:00 pm…Shotgun Start

5:00 pm..…Reception & Silent Auction

5:30 pm…..Dinner & Awards, Emcee TBD

Sep 28

GHA Fall Membership Meeting

Location: Stuckmeyers Farm
249 Schneider Drive Fenton, MO 63026
10:00 a.m. to 12:00 p.m.

The members of GHA are invited to gather for a membership update, education, networking, and fun, while developing community. This event is only for individuals affected by a bleeding disorder and their immediate family. Event also includes snacks, a hayride, and a small pumpkin. 

Event Flyer

Exhibit Booths 10:00     Light Breakfast 10:30     Membership Meeting 11:00

 

RSVP by September 13 (314) 482-5973 or to jmcnamee@gatewayhemophia.org

 

 

 

 

Oct 03-05

NHF Bleeding Disorders Conference

When nearly 3,000 people gather in one place at one time they constitute a united front. That’s what will happen at NHF’s Bleeding Disorders Conference in Anaheim, CA, when kids and adults with bleeding disorders and their families, physicians and researchers, HTC providers, chapter staff and volunteers, and industry partners all congregate October 3-5, 2019.

 

NHF’s Bleeding Disorders Conference Info

Click here for GHA’s grant application, which is due August 1, 2019.

 

Oct 10

Empowered: Tools for Self-Advocacy

Location: Porter's Steakhouse
1000 Eastport Plaza Dr., Collinsville, IL 62234
6:00 p.m. to 7:30 p.m.

Attendees will recognize and discuss the unique challenges of those with hemophilia. This talk provides practical tips and resources to individuals with hemophilia to become a self-advocate in all areas of life.

This program is an educational program for individuals with a bleeding disorder and their families.

Event Flyer

Sponsored by:

 

Nov 01-03

HFM’s 2019 National Conference for Women with Hemophilia

Women who are eligible to join us will experience an amazing weekend learning from health care experts, and have opportunities to connect with other attendees who each bring their own unique wisdom and experience of living with hemophilia.
There is no charge for this weekend; transportation costs, hotel, and meals will be provided.
Application process opens July 2019

Questions? Please contact Patrice Thomas, HFM Program Services Director

734-544-0015, pthomas@hfmich.org

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.

For an application 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.

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

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.

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.

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.