Horizons in Hemophilia January 2012
Save the Date for Hemophilia Day at the Capitol
Mark your calendar and lend your voice! Hemophilia Day at the Capitol will be held on Thursday, March 1, 2012. This year we will focus on ensuring continued support for uninsured patients to purchase life-saving clotting factor, and increasing awareness about the consumer protections in the Affordable Care Act and how they help people with bleeding disorders. If you would like to learn more about Hemophilia Day at the Capitol please contact Michelle Putnam at email@example.com or 770 518-8272.
HoG Scholarship Recipient Katie A. Shares Her Story
By Katie A.
My name is Katie. I am twenty years old and I am a sophomore at Georgia College in Milledgeville, Georgia. My major is Music Therapy and I am working to earn a minor in Creative Arts Therapy. Like many other students in Milledgeville, I live in a small, three-bedroom house about a mile away from the university’s campus with two close friends. Each semester, I take an average of sixteen to eighteen hours of classes and they keep me extremely busy. As a music therapy major, I have declared voice as my primary instrument, but I also play ukulele, guitar, and piano. Read more.
By Michelle Putnam, Associate Director of Research and Advocacy
Many of you have attended Hemophilia Day at the Capitol and talked with legislators about the importance of affordable, continuous health coverage for people with bleeding disorders. As we head into Georgia’s legislative session, it is important to remember that you can be an advocate anywhere. Talking with friends and community members about your bleeding disorder can increase general awareness about the health needs of our community. Read more.
Acetaminophen for Infants
By Penny Kumpf, RN, VWD Community Outreach Nurse
With all the great news out there it is easy to miss a piece of health information that might be of everyday value to you or your family. Just such a news flash was released in December and I would like to share the link with you: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm284563.htm. This one concerns the use of acetaminophen, or Tylenol®, which is often used for someone who has a bleeding disorder and is in pain. Read more.
Hemophilia of Georgia Needs Assessment Findings
By Karen Daniel, Marketing and Communications Director
Over the past few months, Community Evaluation Solutions, Inc. conducted a needs assessment study of Hemophilia of Georgia clients to find out how HoG could improve its programs and services for the bleeding disorder community. More than 400 people participated in the study by attending a focus group interview, completing a written survey, or answering a survey over the telephone. Overall, we learned that HoG clients are very satisfied with the services provided by HoG. Read more.
Camp Wannaklot 2012
Camp Wannaklot will be held July 22-27, 2012. Counselors will arrive on July 21st. If you’re interested in volunteering as a camp counselor, please contact Kim Wilson at firstname.lastname@example.org or 770 518-8272.
Reminders about Stimate® Nasal Spray
By Leigh Carpenter, RPh, Director of Pharmacy
Stimate® nasal spray is indicated for patients with mild to moderate classic von Willebrand Disease (Type I) with factor VIII levels greater than 5% and for patients with hemophilia A with factor VIII levels greater than 5%. The nasal spray pump comes in a 2.5ml bottle which delivers 25 doses of 150mcg. The package insert was revised within the past year to reflect a change in storage requirements. Stimate® can now be stored at room temperature not to exceed 77 degrees Fahrenheit (25 degrees Celsius). Read more.
Trot to Clot Walk and Run
By Vic McCarty, Director of Development
The 3rd annual Trot to Clot Walk and Run will be Saturday, May 19th at Stone Mountain Park. This fun, family-centered event will raise money for Camp Wannaklot, the only summer camp in Georgia for children and teens who have hemophilia or other inherited bleeding disorders. There’s something for everyone at the Trot to Clot Walk and Run. Read more.
Client Dinner Photos
View photos from recent Hemophilia of Georgia client dinners.
Hemophilia of Georgia is not engaged in the practice of medicine and does not endorse or support any particular factor concentrate or treatment protocol. HoG recommends that you consult with your physician prior to starting any course of therapy. Occasionally HoG disseminates information on new treatments or therapies. HoG shares this for informational purposes only and makes no claim as to its accuracy or effectiveness.