The 4 and the 5 in May in the squares of all Italy the hearts of biscuit of Telethon and UILDM foundation for research on rare genetic diseases
In more than 1.600 squares throughout Italy, on 4 and 5 May the biscuit hearts will be distributed by the volunteers of the Telethon Foundation and UILDM - Italian Union for the Fight against Muscular Dystrophy, and of AVIS, Anffas and UNPLI.
Sweet biscuits distributed as thanks with a minimum donation of 12 euro to support the "I for you" campaign in favor of scientific research on rare genetic diseases.
"Io per lei", the spring campaign of the Telethon Foundation and UILDM - Italian Union for the Fight against Muscular Dystrophy, which focuses on mothers and their commitment, to support scientific research on rare genetic diseases and assistance to people with neuromuscular diseases. On 4 and 5 May, in more than 1.600 squares throughout Italy, banquets will be set up where the volunteers of the Telethon Foundation and UILDM, and of AVIS blood volunteers, Anffas - National Association of Families of People with Intellectual and / or Relational Disabilities and UNPLI - National Union of the Pro Loco of Italy, will distribute the Biscuit Hearts, a perfect gift to celebrate mother, with a minimum donation of 12 euros: the campaign will be on air in fact near an important anniversary such as Mother's Day .
“The Telethon Foundation has for years been at the side of those who live with a rare genetic disease, through excellent scientific research that has allowed us to treat insidious diseases, too often neglected precisely because of their rarity. All this happens thanks to the support of the Italians who, with donations, allow us to continue to keep our commitment to those who face the difficulties of a rare genetic disease and their families - comments Francesca Pasinelli, director general of Fondazione Telethon. - Mother's Day is an anniversary in which each of us turns a thought to all those women who represent a point of reference in our lives: the 'Io per Lei' campaign is dedicated precisely to the 'rare mothers' who fight every day with strength for the future of their children ".
"With our commitment for the Spring Campaign - states Marco Rasconi, UILDM national president - we want to highlight the important role of research which, together with the work of the associations at the territorial level, has allowed us to achieve unexpected results in improving quality of the life of people with neuromuscular pathologies. Who lives with a neuromuscular pathology can live longer, can feel good, work, become a parent. Can volunteer and engage in society at all levels. He is no longer identifiable only with his illness. When this does not happen the person loses a part of himself and at the same time the company loses the opportunity to grow and change his point of view ".
THE TELETHON-UILDM CALL
From the 2001 the funds raised by the UILDM Sections support the Telethon-UILDM Call, in which, only in the last 10 years, have been invested over 10 million euros specifically aimed at improving the quality of life of neuromuscular patients, published beyond 200 scientific articles and more than 6.000 people involved in studies. This year's edition of the competition focuses on clinical research projects on muscular dystrophies and myopathies, with the aim of improving the knowledge of these pathologies, their natural history, the relationship between genetics and clinical manifestation, the definition of measures optimal to use to monitor the progression of the disease and the effectiveness of the therapies, or to implement treatment standards and new methods of therapeutic intervention.
THE HEARTS OF BISCUIT
The Biscuit Hearts are contained in elegant tin boxes with attention to detail, in three different colors with a spring flavor: blue, for cocoa and chocolate chip cookies, green, for wholemeal flour biscuits, and orange, for Sicilian biscuits with oranges, a new recipe produced exclusively for the Telethon Foundation.
They are produced by the historic Genoese pastry shop Grondona, a family business that for over a hundred years has been offering pastry specialties with great attention to the quality of the raw materials.
In each tin box, personalized with the word "heart" and the now symbolic claim "I support research with all my heart", there are three trays, individually packaged to keep the aroma of freshly baked cookies. Inside the pack there is also an informative brochure that tells the results and successes of the Telethon Foundation, with a convenient bookmark to detach and keep.
Then filling out the online form with your data at www.telethon.it/primavera, the donor who has chosen the Biscuit Hearts can receive the Telethon News, the magazine of the Telethon Foundation, for one year for free. Scientific research can make the difference to improve the quality of life of people with a rare genetic disease and their families.
To find the nearest collection point, visit http://ioperlei.telethon.it/
It is also possible to actively participate in the campaign as a volunteer and help distribute Biscuit Hearts by calling the 06.44015758 number or by writing to voluntary@telethon.it.
Finally, it will be possible to request the Biscuit Hearts directly on the website www.telethon.it in the solidarity shop section.
THE PARTNERS FOR "I FOR HER"
BNL Gruppo BNP Paribas, historic partner of the Telethon Foundation, has also decided to participate in this solidarity network, making local agencies available as early as April to distribute biscuit Hearts to its customers and support research on rare genetic diseases.
Thanks to the partnership with Auchan Retail Italia, from the 8 April to the 12 May, the customers of the Auchan, Simply and Lillapois stores will be able to support scientific research with a donation of 1 € to the cash desks and receive a package of Biscuit Hearts from 20 gr .
Also CNH Industrial, Lottomatica Italia Servizi (LIS) with the support of the Italian Federation of Tobacconists (FIT), Marionnaud and Mercato Centrale join the campaign with several fundraising initiatives to make their own contribution to research.
The campaign will also be promoted by SEA Milan Airports and Italo NTV.
DEPTH:
Telethon Foundation
Fondazione Telethon is one of the main Italian biomedical charity, born in 1990 on the initiative of a group of patients suffering from muscular dystrophy.
Its mission is to reach the care of rare genetic diseases thanks to an excellent scientific research, selected according to the best practices shared at international level.
Through a unique method in the Italian panorama, it follows the entire "research chain" dealing with fundraising, the selection and financing of projects and the research activity carried out in the Foundation's centers and laboratories. Telethon also develops collaborations with public health institutions and pharmaceutical industries to translate research results into therapies accessible to patients.
Since its founding has invested in research nearly 500 million, has financed over 2.620 projects with over 1.600 researchers involved and more than 570 diseases studied. To date, thanks to the Telethon Foundation, the first gene therapy with stem cells in the world has been made available thanks to the collaboration with GlaxoSmithKline and San Raffaele Hospital. Strimvelis, this is the commercial name of the therapy, is intended for the treatment of ADA-SCID, a severe immunodeficiency that compromises the body's defenses from birth. Gene therapy is at an advanced stage of experimentation also for metachromatic leukodystrophy (a serious neurodegenerative disease), Wiskott-Aldrich syndrome (an immunodeficiency) and for beta thalassemia, while it has just been started for two childhood metabolic diseases (respectively the mucopolysaccharidosis of the 6 type and the 1 type). Furthermore, within the Telethon institutes, a therapeutic strategy aimed at other genetic diseases, such as haemophilia or different hereditary sight defects, is at an advanced stage of study or development. At the same time, the study of basic mechanisms and potential therapeutic approaches for still unanswered pathologies continues in all Telethon-funded laboratories.
Italian Union Fighting Muscular Dystrophy (UILDM)
UILDM was founded in 1961 with the aim of promoting the social inclusion of people with disabilities, through the removal of all types of barriers, and supporting scientific research and information on dystrophies and other neuromuscular diseases. It has a widespread presence on the territory thanks to the 66 local Sections, the 3.000 volunteers and the 10.000 members, who are a reference point for about 30.000 people. UILDM carries out an important work in the social and medical-rehabilitative assistance on a wide range, also managing outpatient rehabilitation, prevention and research centers, in close collaboration with university and socio-health structures.