The FD forum (Familial Dysautonomia) comprises about 35 male and female adolescents and adults who have Familial Dysautonomia.
Familial Dysautonomia is a genetic disease which affects many vital functions, including: the digestive system, blood pressure, regulation of the body's temperature and equilibrium. Besides effecting each individual personally, it often causes social isolation.
This is one of the areas where the volunteers of Simcha Layeled’s Big Brother/Sister Program intervene. Within the project's framework, every young person is assigned a volunteer/friend in order to help alleviate, if only slightly, the social isolation experienced daily by the adolescents.
Volunteering involves continuous telephone contact during the year with the adolescent, regular visits and accompanying them during excursions and fun days, which are held every few months. In addition, the volunteers are trained in various areas related to dealing with the disease.
The volunteers work and the activities are supervised by the forum's coordinator, and the group is accompanied by a social worker and a National Service Staff member.
We coordinate an annual four-day spring seminar. Both the forum's adolescents/adults, along with each one’s big brother/sister volunteer participate in the camp. Activities include enjoyable athletic games, tours, workshops and lectures, giving them renewed strength for their continued daily struggle with the disease.
We coordinate all these activities through and work very closely The Center for Familial Dysautonomia at the Hadassah Mt. Scopus Hospital", and with the "Israeli Association for Familial Dysautonomia".
Because of our close relationship to these groups, we are able to continue to expand the our activities with the FD patients.
A volunteer comments:
" During my mentoring at the " Dysautonomia" project in "Simcha Layeled ", I met a special and kind girl who deals with quite a complex illness. Her enormous courage in dealing with her disease is boundless and it enables to move forward. Our encounters were based on respect for each other and the openness was created with time and lots of love. The meetings were held at the girl's home, once every three weeks. As our relationship grew closer, anticipation for the meetings increased and they were interesting and full of meaningfull content. Introducing a new person into your life is not easy, but we were both pleased and it was a lot of fun to share, listen, tell stories and experience together "...
Anat (24), Petah-Tikva
A volunteer friend at the FD forum
An adolescent/adult comments:
"…My relationship with "Simcha Layeled " began at the camp in Yemin Ord, I couldn't sleep at the camp due to health problems, but I did come to the activities and enjoyed them (particularly the jeep trek…)…we had some karaoke and I didn't really want to get up and sing…but Gili convinced me – and ever since there's a tradition – the three of us, me, Noa and Gili get up and sing every time…I enjoy being with my friends without my parents…it's completely different from going to a trip with my family, there's a different atmosphere, a fun atmosphere…
I have been accompanied by Chen, a friend from "Simcha Layeled" , for about half a year now. I love it when there's something to do with all the guys and my parents know it and encourage me to participate although it is a long ride…"
Anat (33), Haifa
A mature graduate of the FD forum
For more details:
Dorit Gez - Forum manager: