Le peloton de lespoir Ride ATAXIA Europe July 1 - 8, 2017 Anabella - PowerPoint PPT Presentation

Le peloton de l’espoir Ride ATAXIA Europe July 1 - 8, 2017 Anabella SARAIVA Fabrice LECORNU Kyle BRYANT The Peloton of Hope - Philadelphy 1 16 October 17

Summary • Birth of the Peloton de l’Espoir • Concept + Project • A great human and sports challenge • Balance sheet • Achieved Objectives • The adventure continues • Thanks • Cure FA The Peloton of Hope - Philadelphy 2 16 October 17

BIRTH OF THE PELOTON DE L’ESPOIR The Peloton of Hope - Philadelphy 3 16 October 17

Beginning of the adventure • A long friendship between: • Dr. Hélène Puccio , Research Head at the Institute of Genetic and Molecular and Cellular Biology (IGBMC Illkirch) & • Kyle Bryant , RideAtaxia Program Director • Dr. H. Puccio presented RideAtaxia rides at the AFAF’s annual meeting (French FA association) in April 2016 • Looking for families to undertake a RideAtaxia event in France / Europe The Peloton of Hope - Philadelphy 4 16 October 17

The Organization Team • Immediately Anabella Saraiva , mother of 2 FA children + AFAF’s member decided to support the project Coordinator French Organization • Dr. Hélène Puccio at the origin of the project + coordinator with FARA • Kyle Bryant , RideAtaxia Program Director Coordinator American organization • French organization’s team: Marie-Claire Joguet, Françoise Piguet, Fabrice Lecornu… • FARA + AFAF = involved associations The Peloton of Hope - Philadelphy 5 16 October 17

CONCEPT + PROJECT The Peloton of Hope - Philadelphy 6 16 October 17

The Concept • Idea • Import the RideAtaxia American concept into France/Europe • Create nation- wide events (bike rides, walks, …) organized by volunteers and associations • Image • A RideAtaxia Europe website http://rideataxia.afaf.asso.fr • A Facebook page • A mascot : Friedy The Peloton of Hope - Philadelphy 7 16 October 17

The Project • 1 st event in France : “ PELOTON DE L’ESPOIR ” • A whole week from July 1 st to 8 th , 2017 • 7 stages and a Community Day • 51 cyclists: • 22 American & 29 French riders • 15 women + 36 men from 18 to 77 • 3 FA : Kyle, Fabrice, Alain The Peloton of Hope - Philadelphy 8 16 October 17

US Team The Peloton of Hope - Philadelphy 9 16 October 17

The Project • 22 Volunteers to take care of the 51 riders The Peloton de l’Espoir Caravan (11 cars + 3 camper vans) The ORANGE • 14 women + 7 men • 20 French • 1 American girl (Felicia) • 3 doctors + 1 nurse • The Red Cross on all stages The Peloton of Hope - Philadelphy 10 16 October 17

The Staff • Mechanical support • Wonderful cooks and daily chores • Reporters • Suitcase carriers • Volunteers for refueling • Flag persons • Organization on arrival… The Peloton of Hope - Philadelphy 11 16 October 17

The 420 mile Route • 51 cyclists riding from Strasbourg (Illkirch) to Lyon (Lentilly) • 7 stages = 420 miles (about 60 miles / day) The Peloton of Hope - Philadelphy 12 16 October 17

The project Goals 1. Support and involve patients 2. Raise awareness about FA 3. Fundraising for Research 4. Strengthening links (friendship + collaboration) between FARA and AFAF 1. Enlarge International patient Database The Peloton of Hope - Philadelphy 13 16 October 17

A GREAT HUMAN & SPORTS CHALLENGE The Peloton of Hope - Philadelphy 14 16 October 17

Day 1 : Strarsboug / IBGMC • Symposium (scientific talks about Friedreich Ataxia) • Meeting between FA families and riders, Barbecue party, • Start of the 1 st stage. The Peloton of Hope - Philadelphy 15 16 October 17

The 7 stages • July 1 st to 7 th : a great human and sports challenge • 7 overnight cities + 7 lunch cities • Beautiful sceneries + the wine route + good French food The Peloton of Hope - Philadelphy 16 16 October 17

The 7 stages • At each cities: • Warm welcome • Festive atmosphere • Entertainments The Peloton of Hope - Philadelphy 17 16 October 17

Day 7: Arrival in Lentilly • July 7 th / incredible welcome • Lot of joy, emotion, human warmth, pride of having finished The Peloton of Hope - Philadelphy 18 16 October 17

Day 8: Lentilly – Community Day • July 8 th : Single day in Lentilly with 3 Loops • 5 / 35 / 50 miles • Buffet lunch • Entertainments… Lot of fun and joy The Peloton of Hope - Philadelphy 19 16 October 17

540 Riders in Lentilly • Families, friends • Children from schools • Personalities • Disabled people… The Peloton of Hope - Philadelphy 20 16 October 17

540 Riders in Lentilly • Many bike clubs from all the regions The Peloton of Hope - Philadelphy 21 16 October 17

The Wall of Hope • A steep climb to raise awareness of difficulty and disability • Congratulation to children helping young riders in difficulties • Thanks to children for their drawings for the “Wall of Hope” The Peloton of Hope - Philadelphy 22 16 October 17

Demonstrations in Lentilly • More than 10 high level shows • Thanks to all artists The Peloton of Hope - Philadelphy 23 16 October 17

Activities in Lentilly • A great success to all activities: • Wellness stands and tattoos • Firefighter, water scales,Trike trails… The Peloton of Hope - Philadelphy 24 16 October 17

Host families in Lentilly • 26 host families • 72 hosted people • 22 Americans • 50 European The Peloton of Hope - Philadelphy 25 16 October 17

8 Days: A Strong Commitment • Personal investment • sharing, joy, pride, 16 October 17 The Peloton of Hope - Philadelphy 26

Emotions, feelings • Great solidarity, sharing values, leaving together, camaraderie The Peloton of Hope - Philadelphy 27 16 October 17

250 Volunteers for the whole event • 30 Volunteers in Illkirch, July 1 st • 22 Volunteers on all stages • More than 200 Volunteers in Lentilly The Peloton of Hope - Philadelphy 28 16 October 17

FA patients fully involved • Strong mobilization of FA community: • In the organization of the project • Volunteers on each stage cities • Riding with our cyclists of Hope • Participating and encouraging our riders on stage cities BRAVO!!! The Peloton of Hope - Philadelphy 29 16 October 17

Support from bike clubs also on many stages • Solidarity to our riders The Peloton of Hope - Philadelphy 30 16 October 17

Support from sport personalities and Miss France The Peloton of Hope - Philadelphy 31 16 October 17

Kids were plenty involved The Peloton of Hope - Philadelphy 32 16 October 17

BALANCE SHEET The Peloton of Hope - Philadelphy 33 16 October 17

French balance sheet • Revenues : • Sponsors: $39 600 • Donations: $44 400 • Events in Strasbourg, Lentilly, stop cities, various sales, riders package …: $58 800 • Lentilly net income: about $14 400 • Expenses : • accommodation, meals, insurance, jerseys, t-shirts, communication, rental equipment …: $46 800 The Peloton of Hope - Philadelphy 34 16 October 17

US and French balance sheet • Initial objective for each of the 22 American riders: • Collect at least $ 1 000 / rider = $ 22 000 • US fundraising = $ 40 000 • US+ French fundraising: $ 96 000+ $ 40 000 about $ 136 000 The Peloton of Hope - Philadelphy 35 16 October 17

ACHIEVED OBJECTIVES The Peloton of Hope - Philadelphy 36 16 October 17

Success of the Peloton de l’Espoir • All the initial goals have been exceeded: • Huge communication around the event, FA awareness, changing the perspective on disability • More than 40 publications on newspapers, web, on all stage cities… • TV reports, radio broadcasting • Awareness-raising actions in schools, handicap fairs, sports events, bike clubs, associations, collectivities, traders… • Mobilization of an entire municipality, local elected representatives, politicians, IGBMC Institute… The Peloton of Hope - Philadelphy 16 October 17 37

Success of the Peloton de l’Espoir • Fundraising to finance research : AFAF + FARA will co- finance a grant to change the outlook on FA research • Amazing and crazy adventure that have federated everyone and gave hope and strength to FA patients and FA community • Birth of RideAtaxia Europe + many ideas raised to be more efficient to cure FA • Global Patient Registry has been increased The Peloton of Hope - Philadelphy 38 16 October 17

Success of the Peloton de l’Espoir • Strengthening links (friendship + collaboration) between FARA and AFAF ▪ All together / one FA community / FA has no border ▪ Strong friendships are created, solidarity, want to keep in touch Determination to go further and faster  Cure FA !!! ▪ The Peloton of Hope - Philadelphy 39 16 October 17

THE ADVENTURE CONTINUES The Peloton of Hope - Philadelphy 40 16 October 17