A Special Message to All GT Applicants

Hi All! I know you are all waiting with bated breath so I wanted to reach out to provide some more details.

We are still actively recruiting for the Symposia. Information has been emailed to all treatment centers and chapters and physical mailings go out next week. Registration will remain open to give others a chance to respond and will close on September 30. We will be notifying everyone by October 4th in order to give us time to get travel booked.

As this is a pilot program, one of the realities is that we will have more applicants than spots. All of our programs have started with a pilot and part of the competitive grant process is to prove that there is a need. Six national programs and seven years later, we already know that there is a NEED in the GT community. We just have to have data to back it up. Sadly, we will not be able to take everyone and we do know how disappointing that is. It is never our favorite communication. Another program similar to this one that we have done is for those affected by FVII deficiency. The first year we had 18 families and are happy to say that 5 years later we are up to 45 families with plans for up to 55 next year.

We know from personal experience how frustrating this process is as both Eric Lowe and myself (co-owners and co-founders of CHES) live with FVIII deficiency with an inhibitor. The lack of information and peers for those of us in the rare bleeding disorders space and/or treatment complications is vast. Please be patient with us. We are on your side and just as excited to be able to offer this program!!

-Janet Brewer, M.Ed

About the Program

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Individuals with Glanzmann’s Thrombasthenia (GT) are a very small group within the bleeding disorder community with a unique set of needs for education, advocacy and support.  The GT Summit is intended to bring those affected by this very rare bleeding disorder together to establish a community.  Over the years, CHES has seen the benefits of these programs for families and individuals where participants finally feel as though there is someone else out there who truly understands their unique needs.

Thanks to the support of an educational grant from Novo Nordisk, CHES can provide this program to individuals and their families at absolutely no cost.  See the FAQs for more details.

Join us for a weekend of education, support, and fun for those affected by GT and their families.

What to Expect

Fly into the Newport News/Williamsburg International Airport on Friday morning/afternoon, followed by a 15-minute transport to the Newport News Marriott, where we will be staying for the weekend.

After check-in and registration, we will get together for dinner to make new friends, connect with FaceBook friends and begin the process of creating a support network for the GT community.

After breakfast on Saturday morning, our full day of sessions begins with speakers on topics such as Glanzmann’s Thrombosthenia 101, caregiver needs, self-infusion, your child’s school needs, and more!  Childcare will be provided for children ages 0-12 with a field trip for ages 3-12 to the VirginiaLiving Museum.  Teens will have their own separate track.   Saturday evening, we will enjoy a little free time, dinner, and entertainment as we continue building relationships within the community.

Sunday morning, we will finish off the weekend with a wrap-up and goodbyes.

Date:
Friday, November 4th-6th, 2016
 
Location:
Newport News Marriott at City Center
740 Town Center Drive
Newport News, VA 23606
PH: (757) 873-9299

 

Registration is Closed

Applicants must pre-register for screening purposes before completing the primary registration requirements.  Act promptly to reserve your spot, as this is a first-come, first-served basis.

If you have not already done so, please sign up to recieve GT Alerts for announcements on this program via email and/or text.  You’ll be the first to know the details for current/future programs.

Registration is on a first-come, first-served basis for qualifying registrants, so we encourage you to act promptly.  Please note, this is a regional program.  Please see “Who can attend” in the FAQs below for geographical restrictions.  Thank you for visiting us!

For questions on who can attend and more:

View the Frequently Asked Questions below
Call (781) 878-8561
Who can attend?

Anyone with a diagnosis Glanzmann’s Thrombasthenia and their immediate family (those who live under the same household.)

Where is the nearest hospital?

The Riverside Regional Medical Center is just 7 minutes away.

Will the location be accessible to wheelchairs and other mobility devices?

Absolutely!

Will there be medical coverage?

The nearest HTC’s include the Children’s Hospital of the King’s Daughters just45 minutes away and the Virginia Commonwealth University – just over an hour away.

How much does it cost to attend?

There are no costs associated with attending.  Travel related expenses including tolls, mileage and parking will be reimbursed. Air transportation will be arranged for you.  All meals will be provided on site.

What should I bring?

Your factor and supplies, as there will not be any on site.  Also bring your enthusiasm and willingness to reach out so we can learn from each other!

Will there be child care available?

Childcare will be provided on site during educational sessions for ages 0-2.  A field trip is available for children ages 3-12, and teens will have their own separate sessions all weekend.

What about patient confidentiality?

Information that you share or hear will be treated with the utmost respect and never disclosed without your permission.  We want participants to feel comfortable so that we may support one another.