To enhance the effectiveness of its mission and its actions, the Foundation relies on the generosity of volunteers who play a major role in relaying its actions to the different targets involved in its communication and general economy (families, physicians, institutions, associations, politicians, journalists).
These employed or retired men and women, donate some of their free time to the Jérôme Lejeune Foundation. As real activists, they participate and organise all kinds of events helping in the expanding and the financing of the Jérôme Lejeune Foundation. They manage the information stands, organise fundraising events, and work at the headquarters of the Jérôme Lejeune Foundation on important mailing events and other important assignments...
Event creator :
Amaury and Elodie Valentin, creators of the Oscar trophy: a golf trophy to fund research.
Amaury and Elodie Valentin are golf enthusiasts. Since the birth of Oscar who has Down syndrome, in 2005, they decided to combine their sport and their commitment to Down syndrome by organising the Oscar trophy. It is a competition whose profits go to the Jérôme Lejeune Foundation to support research on Down syndrome. This trophy is in 4 different golf courses: Isabella (in Yvelines département), Brigode (in Nord département) Merignies (in Nord département) Villarceaux (in Val d’Oise département).
Where did the idea of a golf trophy to fund research originate? From an observation and a wish: very few people with intellectual disabilities have access to this sport and we would like that one day Oscar will be able to play golf with the family and share with us this activity which we hold so dear.
To promote the acceptance of Oscar in this world of sport and to allow people with disabilities to participate in this sport, we wanted to be immediately proactive in educating the members of our club, our neighbours, and our golfing friends about Down syndrome.
How has this idea evolved ?
In the beginning our golf club agreed to organise the first competition and to donate the profits to the Jérôme Lejeune Foundation. A great effort was made to find sponsors and now they contribute each year to the success of Oscar trophy.
The Trophy has expanded with new golf courses joining us, and I take this opportunity to thank all four. One of the latest golf courses to join us is Mérignies in Flersin-en-Escrebieux (in Nord département) owned by the Gaulier family, of whom Gregory has Down syndrome.
Volunteers at Headquarters
Monique Morice: one of the original volunteers at headquarters.
Alongside Mrs Lejeune, Monique Morice has been there since the creation of the Jérôme Lejeune Foundation in 1995; she comes to help out at the Foundation every week. She sent out the first tax receipts to the first donors of the Jérôme Lejeune Foundation.
Comment a débuté la Fondation Jérôme Lejeune ?
At first, in the apartment of Ms. Lejeune, everything was manual: for each donor, we manually made an index card filed alphabetically in boxes.
Today all is done on computer, and despite my age I am able to process donations that are received today at the Jérôme Lejeune Foundation.
Volunteering in the community
The network of the Jérôme Lejeune Foundation
The network of Jérôme Lejeune Foundation, launched in 2003, consists of more than 350 volunteers spread throughout France.
In each region, these volunteers are organised in sets of three:
- A member of a family affected by intellectual disabilities of genetic origin (Down syndrome or other)
- A doctor close to the Jérôme Lejeune Foundation
- A person or an "action" family.
This network aims to:
- Help families affected by disability, by putting them in contact with other families, professionals and local facilities to support their child. The network also provides information regarding the possibility of sending the person to the Jérôme Lejeune Institute for specialised assessments,
- To provide information about the latest research into the development of treatments for genetic intellectual disabilities
- Advocate for the dignity of people with disabilities by educating the public, opinion leaders and local health professionals,
- Raise funds for the Jérôme Lejeune Foundation.
The network organises conferences (in schools, colleges, associations, parishes ...), concerts, plays, workshops, sales, shopping, sporting events and other events that showcase the Jérôme Lejeune Foundation.
Join the large team of Jérôme Lejeune Foundation network and access the extranet site reserved for members.
Find all the actions of the Jérôme Lejeune Foundation on the network calendar.
Want to become a volunteer for the Jérôme Lejeune Foundation?
For more information on available assignments, contact Olivier Roubaud, volunteer coordinator, who directs the good will and skills towards the different services!