The AOA2 association, a hope for our stars, held its annual General Meeting on Sunday March 29 at the Weapons Hall of the Gérardmer Town Hall, in the presence of Mr. 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 characterized by sports or solidarity activities (flea markets, Christmas markets, private parties), involving over 40 active volunteers. This association raises funds by selling tarte flambées at popular markets, sports events, camping, and gourmet walks. In this regard, the president thanks the various private and community partners, whose significant number confirms the local and regional anchoring of the association. The treasurer, Stéphane LORRE, presented a positive financial balance approved unanimously. He specified that all the actions carried out showcase solid finances and a renewed commitment to support medical research against the rare disease affecting his two children. A highlight of this meeting was the association’s secretary, Céline ROLLAND, presenting the latest advances by Professor Brent Fogel, an internationally renowned American researcher (UCLA), financially supported by the association since 2020. In 2025, Professor Fogel published a groundbreaking review in the Annals of Neurology on recessive ataxias, confirming his role as a global expert. He notably announced the development of a new biomarker to measure in real time the activity of the SETX gene, whose malfunction is responsible for AOA2. This innovation marks a decisive step towards future clinical trials. This presentation sparked hope and emotion among the participants. Next, Mr. Jean Paul Bournot, a board member, synthesized the discussions with deputy Christophe Naegelen regarding the proposed law to allow the tax deductibility of donations to research-funding associations outside the EU. To date, no response has been received, but thanks were expressed for this concrete commitment. The president concluded the meeting by presenting the scheduled actions for 2026. After thanking the attending members and giving the floor to the Mayor, the General Assembly concluded with a toast of friendship, a symbol of unity and determination of volunteers to continue this wonderful solidarity around this family from Gérardmer.
Association AOA2, a hope for our stars. Email: aoa2.pournotreetoile@hotmail.com Website: www.aoa2pournotreetoile.fr.
