Buy a charity bib: TOR100 Cervino Monte Bianco | TOR130 Tot Dret
For years now, the LND Famiglie Italiane association has been financing and implementing research and intervention projects to support families and patients of all ages in this "difficult life," providing professional counseling and psychological support to family members, teachers, rehabilitators, educators, and staff in care facilities.
Over the years, we have looked to the organization of the TOR - which is aware of the effort that extreme sports entail, which proposes and foresees "BASI VITA" (basic life) to endure and move forward - as an example also for the effort of our families. We thought that our families also needed opportunities to be refreshed and supported on this difficult path. And so, with the help of solidarity bibs, we have established and support the "Thursday Desk," a weekly space with a dedicated number where our experienced psychologist and psychotherapist answers. The desk is reached by family members, operators, and caregivers. Learn more: https://lesch-nyhan.eu/novita-nasce-lo-sportello-psicologa/
We continue with home visits, integrated parent/teacher groups, parent-teacher and rehabilitator groups on an online platform, in collaboration with other associations for leisure initiatives, entertainment, and playful and educational workshops.
We continue the annual Open Days where many families, even from outside Italy, have the opportunity to undergo multidisciplinary consultations, visits, and meetings at the Gaslini Institute for Care and Research in Genoa.
From all this work, new ideas for proposals for clinical and basic research are born and continue to emerge, always aiming, we hope, towards a therapy for this disease that has not yet found specific cures.
It may seem like another world, but when at the start of many Tor des Géants races for many years, wheelchairs move forward and our kids smile at the music and applause, even our dreams as parents set off again towards a possible future: fatigue, difficulty, cannot stop us, even if we are parents and volunteers in small numbers, given the rarity of the disease, with "small" resources. At the start, we always hear our slogan repeated, "RARE DOESN'T MEAN ALONE," and off we go, we run!