Szeptember 7-e Duchenne világnap! Számunkra nagyon jó hírrel:

2018. szeptember 11.
Örömmel tájékoztatunk mindenkit, hogy negyvenöt pályázó közül a Gyógyító Jószándék Alapítványt is nyertesként hirdették ki a "PTCBio for a STRIVE for DMD Award" pályázatán! Hét másik díjazott szervezettel együtt ünnepelünk!
Büszkék vagyunk arra, hogy a PTCBio elismeri és támogatja az elképzeléseinket. Örülünk, hogy a 27 ezer dolláros díj segíti az érintettek életminőségének javítását, a 16 éve elkezdett közösség-építésünk folytatását. A pályázaton nyert összegből az elkövetkezendő időszakban több rehabilitációs családi találkozó megvalósítását is finanszírozzuk majd, folyamatosan tájékoztatjuk az érintett családokat a terápiás lehetőségekről, az új gyógyszerek klinikai kipróbálásairól. Támogatjuk az érintettek rehabilitációját, gyógytorna és gyógymasszázs kezeléseit. További információk itt és az alapítvány facebook oldalán láthatóak.   Az angol szöveg után látható a STRIVE Award sajtóanyaga is.

Előző eseményeinkről nézzétek a fb-n és itt a tavaszi és nyári fotóinkat.

GREAT NEWS! We've been selected from 45 entries worldwide by @PTCBio for a STRIVE for #DMD Award. Joining 7 other patient organizations worldwide in celebrating winning the Awards!
We are proud to announce PTCBio's support for our initiatives. We are thrilled to have won this STRIVE Award, which will help us to improve the lives of people affected by Duchenne. The grant will help us to run a series of meetings aimed at getting patients and families together to build relationships, and to share important information about clinical trials, physical rehabilitation and social integration.

Read more about our winning entry here  and on our facebook page.

Ez pedig a STRIVE Awards sajtó-anyaga:

September 7, 2018

HEALING GOODWILL FOUNDATION - DUCHENNE HUNGARY RECEIVES GLOBAL DUCHENNE MUSCULAR DYSTROPHY PATIENT GROUP AWARD

  • STRIVE Awards Program Recognizes Excellence and Innovation in the Duchenne Muscular Dystrophy Community

Budapest, Hungary, September 7, 2018 – The Healing Goodwill Foundation – Duchenne Hungary is pleased to announce that it will receive one of the sought-after Strategies to Realize Innovation, Vision and Empowerment (STRIVE) Awards, created by PTC Therapeutics, Inc. to aid nonprofit organizations committed to serving the Duchenne muscular dystrophy (DMD) community. Today’s announcement coincides with World Duchenne Awareness Day 2018, a global effort to raise worldwide awareness of Duchenne.

“We are thrilled to have won this STRIVE Award, which will help us make a real difference to the lives of people affected by Duchenne,” said Réka Béndek, Volunteer Assistant, The Healing Goodwill Foundation – Duchenne Hungary. “The grant will help us to run a series of meetings aimed at getting patients and families together to build relationships, and to share important information about clinical trials, physical rehabilitation and social integration.”

The STRIVE Awards recognize the vital role patient advocacy groups play in improving the lives of individuals affected by DMD, and grants are awarded to facilitate unique, inventive ideas or programs that support patients and families within the Duchenne community.

Award entries were received from 45 organizations from across the world. An independent panel of external experts, knowledgeable in rare diseases, patient advocacy and funding initiatives, judged the entries for innovation, vision, and empowerment. The Healing Goodwill Foundation – Duchenne Hungary was one of 8 organizations to receive the Award, with judges commending the “innovative and collaborative” nature of the winning applications.

About Healing Goodwill Foundation – Duchenne Hungary

The Healing Goodwill Foundation/ Duchenne Hungary was legally formed in November 2002, with the aim of coordinating the therapy of children suffering from DMD, SMA and other muscular disorders. It is a non-profit organization aving its individual budget supported in the past years by civil people, companies and winning some tenders. We truly believe that we can provide enormous support to DMD families to better manage their everyday lives. For more than 15 years our mission has been to support DMD families in being stronger, healthier, more balanced and more educated on the diverse aspects of their condition. 

FOR MORE INFORMATION:

Healing Goodwill Foundation – Duchenne Hungary

Réka Béndek, Volunteer Assistant

E: rekabendek@gmail.com

T: +36305366558