News

Executively Speaking                           click-newsletter

It’s hard to believe that that summer is just around the corner and here at FHA we have several great programs planned for you, including three sessions of Dolphin Day Camp! This is one of my favorite summertime adventures that we’ve been able to provide to our families for the past several years. If you haven’t experienced it, you should. Participants spend the day in beautiful Key Largo learning about and touching some exotic sea creatures and also get to swim with the incredibly gentle dolphins: Squirt, Bella and Tashi!

 

I’m also looking forward to our Annual Family Education Symposium scheduled on August 7 – 10. And because of the suggestions made by many of you, we’ve extended the meeting to an additional full day! If you haven’t received your registration packets, they can be downloaded from our website or you can call us and we’ll be happy to send them to you again. We have an excellent weekend planned for you and your family so if you do plan on participating, please complete and return your forms soon as space is limited and you don’t want to miss out on this special weekend!

 

Last but not least, I want to thank EVERYONE for their participation in this year’s 4th Annual Walk in the Jungle! It was an amazing day and this year we had a record-breaking number of registered walkers, over 1,000, which is the most we have ever had! The walk is our largest annual fundraiser that supports the programs and services that we’re able to provide to the bleeding disorder community. Although we got off to a slow start to the walk season, we were able to reach our goal and have raised to date $100,366.00 largely because of the hard work from our team captains, the determination of all the walkers and the generous donations made by our local sponsors! The walk site will remain open for a little while longer for those that want to donate.

 

As always, we are looking for volunteers for some upcoming events like the Family Education Symposium and the Swing for the Kids Golf Tournament. Please contact us if you have any interest in volunteering.

 

I look forward to seeing you all soon!

 

 

Debbi Adamkin
FHA Executive Director

Informe Ejecutivo

Parece increíble que el verano ya está a la vuelta de la esquina y como siempre en FHA tenemos programas excelentes que hemos planeado para ustedes, incluyendo las tres sesiones del Campamento del Dolphin Day! Esta actividad es una de mis aventuras favoritas del verano, la cual venimos ofreciendo a nuestras familias en los últimos años. Si es que todavía no ha asistido, no se la pierda esta vez. Los participantes pasan el día en el bello Cayo Largo aprendiendo y en contacto con algunas de nuestras criaturas exóticas y también pueden nadar con los increíblemente tiernos delfines: Squirt, Bella y Tashi.

 
También estoy esperando con ansias nuestro Simposio Anual de Educación a la Familia programado para del 7 al 10 de agosto. Y gracias a las sugerencias hechas por muchos de ustedes, hemos extendido la reunión un día completo adicional! Si no han recibido los paquetes de inscripción, pueden bajarlos de nuestra pagina web o nos pueden llamar para que gustosamente se los enviemos. Tenemos un excelente fin de semana cuidadosamente planeado para usted y su familia, por lo tanto si esta pensando participar, por favor llene y devuelva los formularios pronto pues el espacio es limitado y no se puede perder de este fin de semana tan especial!

 
Por ultimo, quiero agradecer a todos y CADA UNO de ustedes por su participación en la 4ta Caminata Anual en la Jungla! Fue un día maravilloso, contando este año con un record de caminantes inscritos, más de 1 000, la más alta cantidad que hemos tenido hasta la fecha! La caminata es nuestra actividad recaudadora de fondos más importante, la cual apoya los programas y servicios que ofrecemos a nuestra comunidad con problemas de sangrado. A pesar que tuvimos un inicio un poco lento, fuimos capaces de alcanzar nuestra meta, y hemos recaudado a la fecha $100,366, fundamentalmente debido al fuerte trabajo de nuestros capitanes de equipo, a la determinación de todos los caminantes y a las donaciones generosas de nuestros auspiciadores locales. La página web de la caminata seguirá abierta por un tiempo más para aquellos que quieran todavía donar.

 
Como siempre, estamos en búsqueda de voluntarios para algunos de nuestros futuros eventos, tales como el Simposio de Educación de la Familia y para el Torneo de Golf Swing for the Kids. Por favor contactarnos si es que estuviese interesado en ser voluntario.

 

Esperando verlos pronto, me despido!

 

 

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.