News

Executively Speaking                           click-newsletter

Happy New Year! We’re off to a great start for 2014 and we’ve got some great programs and outings lined up that we hope you’ll want to take part in. We also listened to you and implemented a brand new program for Men and Dads!  The inaugural meeting was in December and was a huge success.  The next one is in the planning stages, so please feel to provide us with any suggestions for the topic and or venue!

Now in its fourth year, the 4th Annual Walk in the Jungle is scheduled on Saturday, May 3 at Jungle Island.  It’s not too soon to register your team and get an early start on your fund-raising goal.  The walk website is already up and running so register your team today. I did!  If you’re not ready to start up your own team, you can participate in ours by joining the Florida Hemophilia Association Blood Drops.  The walk is an activity that families and people of all ages can enjoy.  It’s also proven to be our biggest fund-raiser that affords us the opportunity to provide you with annual programs such as, the Family Education Symposium, Mother’s Brunch and Dolphin Day Camp.  Through events like our walk, golf tournament and Volley for Cure we continue to come together as a community and educate the general public about bleeding disorders.

Lastly as we move on to the New Year, we would like to thank everyone who supported FHA in 2013.  You made it possible for us to continue our mission of serving the bleeding disorder community in Florida and providing programs and services throughout the course of the year.

I look forward to seeing you all soon!

 

Debbi Adamkin
FHA Executive Director

Informe Ejecutivo

Feliz Año Nuevo!  Estamos empezando un excelente 2014, con variedad de buenos programas y actividades que esperamos sean de su agrado y puedan participar de ellos.  También hemos implementado para ustedes un nuevo programa exclusivo para Varones y Padres!  La fecha inaugural fue en Diciembre, la cual tuvo un gran éxito.  Estamos preparando la próxima sesión, así es que por favor agradeceremos nos sugieran temas a tratar y/o lugares donde les gustaría se lleve a cabo!

Ahora ya en su cuarto año, la 4ta. Caminata Anual en la Jungla, está programada para el sábado 3 de mayo en Jungle Island.  Pueden registrar a su equipo ya mismo para que pueda comenzar temprano a recaudar fondos para llegar a su meta.  El website de la caminata ya esta activo, así es que puede regristrar a su equipo hoy mismo.  Yo ya lo hice! Si no se anima a comenzar su propio equipo, puede participar en el nuestro al unirse al Florida Hemophilia Association Blood Drops.  La Caminata es una actividad que todas las familias y personas de toda edad disfrutan.  Está comprobado que es la actividad para captar fondos más importante que tenemos, la que nos brinda la oportunidad de ofrecerles programas anuales tales como los Simposiums de Educación para la Familia, el Brunch para las Madres y el Campamento Dolphin Day.  A través de eventos como nuestra caminata, torneo de golf, y el Volley por la Cura es que continuamos unidos como una comunidad y podemos educar al público en general sobre los transtornos de sangrado.

Finalmente, mientras avanzamos  en el nuevo año, nos gustaría agradecer a todos los que apoyaron a FHA en el 2013.  Ustedes hicieron posible que nosotros continuaramos con la misión de servir a la comunidad con transtornos de sangrado en la Florida y  podamos proporcionarles programas y servicios a través de todo el año.  Abajo tienen un cuadro que describe cómo fueron distribuídos los fondos del 2013 y una lista que restalta todas las personas, empresas, y donantes quienes apoyaron nuestra valiosa causa.

Espero verlos pronto!

 

Debbi Adamkin
FHA Executive Director

 

Product News

Novo Nordisk is pleased to announce Tretten® (Coagulation Factor XIII A-Subunit [Recombinant]) is now available for the routine prophylaxis of bleeding in people with congenital factor XIII (FXIII) A-subunit deficiency, which is a serious, rare bleeding disorder with limited treatment options. Tretten® is the only recombinant treatment for congenital FXIII A-subunit deficiency.

Patients with congenital FXIII A-subunit deficiency have a lifelong susceptibility towards bleeding, including spontaneous intracranial hemorrhage. Caused by a lack of the protein clotting FXIII, congenital FXIII deficiency is estimated to occur in one in 3 to 5 million births in the United States and affects all ethnicities and both genders equally.

The US Food and Drug Administration approved Tretten® in December 2013 based on results from a clinical program that demonstrated the safety and efficacy of Tretten®. Tretten® will offer patients convenient, once-monthly dosing with a short infusion time.

 

Biogen Idec announced that the U.S. Food and Drug Administration (FDA) has approved ALPROLIX [Coagulation Factor IX (Recombinant), Fc Fusion Protein], the first recombinant, DNA derived hemophilia B therapy with prolonged circulation in the body. ALPROLIX is indicated for the control and prevention of bleeding episodes, perioperative (surgical) management and routine prophylaxis in adults and children with hemophilia B. The therapy is shown to reduce bleeding episodes with prophylactic (protective) infusions starting at least a week apart.

 

The approval of ALPROLIX is the first significant advance in hemophilia B treatment in more than 17 years. The therapy is clinically proven to reduce bleeding episodes with a favorable safety and tolerability profile. It is developed using a process called Fc fusion and is the first hemophilia therapy to demonstrate prolonged circulation in the body, which has been shown in adults and adolescents with hemophilia to extend the time between prophylactic infusions.