The AOA2 association, a hope for our stars, held its annual General Assembly on Sunday, March 29th at the Salle des Armes of the Gérardmer Town Hall, in the presence of the Mayor, Thomas GION, members of the board, the board of directors, and about thirty members and supporters.
The President, Fabienne LORRE, presented a moral report highlighting the remarkable dynamism of the association, which has 243 members. The year 2025 was marked by 34 events with a sports or solidarity theme (flea market, Christmas market, private party), involving more than 40 active volunteers. This association raises funds by selling flambé pies during popular events, sports events, camping, gourmet hikes. In this regard, the president thanked the numerous institutional or private partners whose significant number confirms the association’s local and regional roots.
The Treasurer, Stéphane LORRE, presented a positive financial balance sheet unanimously approved. He stated that all the actions carried out highlight solid finances and a renewed commitment to support medical research against the rare disease affecting his two children. A significant moment of this meeting was when the association’s secretary, Céline ROLLAND, presented the latest advances of Professor Brent Fogel, an internationally renowned American researcher (UCLA), financially supported by the association since 2020. In 2025, Professor Fogel published in the Annals of Neurology a reference review on recessive ataxias, confirming his role as a world expert. He notably announced the development of a new biomarker allowing real-time measurement of the activity of the SETX gene, whose failure is responsible for AOA2. This innovation represents a decisive step towards future clinical trials. This presentation sparked a lot of hope and emotion among the participants.
Then, Mr. Jean Paul Bournot, a board member, summarized the discussions with Deputy Christophe Naegelen regarding the proposed law to allow tax exemption for donations to associations funding research outside the EU. To date, no response has been received, however, thanks were expressed for this concrete commitment.
The president concluded this meeting by presenting the calendar of planned actions for 2026. After thanking the present members and giving the floor to the Mayor, the General Assembly concluded with a toast of friendship, symbolizing the cohesion and determination of volunteers to continue this beautiful solidarity dynamic around this family from Gérardmer.
Association AOA2, a hope for our stars Email: aoa2.pournotreetoile@hotmail.com Website: www.aoa2pournotreetoile.fr.
