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

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

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Le peloton de lespoir 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 lEspoir Concept + Project A great

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Le peloton de l’espoir

Ride ATAXIA Europe July 1 - 8, 2017

Anabella SARAIVA Fabrice LECORNU Kyle BRYANT

16 October 17 The Peloton of Hope - Philadelphy 1

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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

16 October 17 The Peloton of Hope - Philadelphy 2

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BIRTH OF THE PELOTON DE L’ESPOIR

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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

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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

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CONCEPT + PROJECT

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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

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The Project

  • 1st event in France : “PELOTON DE L’ESPOIR”
  • A whole week from July 1st to 8th, 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

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US Team

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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

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The Staff

  • Mechanical support
  • Wonderful cooks and daily chores
  • Reporters
  • Suitcase carriers
  • Volunteers for refueling
  • Flag persons
  • Organization on arrival…

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The 420 mile Route

  • 51 cyclists riding from Strasbourg (Illkirch) to Lyon (Lentilly)
  • 7 stages = 420 miles (about 60 miles / day)

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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

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A GREAT HUMAN & SPORTS CHALLENGE

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Day 1 : Strarsboug / IBGMC

  • Symposium (scientific talks about Friedreich Ataxia)
  • Meeting between FA families and riders, Barbecue party,
  • Start of the 1st stage.

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The 7 stages

  • July 1st to 7th: a great human and sports

challenge

  • 7 overnight cities + 7 lunch cities
  • Beautiful sceneries + the wine route +

good French food

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The 7 stages

  • At each cities:
  • Warm welcome
  • Festive atmosphere
  • Entertainments

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Day 7: Arrival in Lentilly

  • July 7th / incredible welcome
  • Lot of joy, emotion, human warmth,

pride of having finished

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Day 8: Lentilly – Community Day

  • July 8th: Single day in Lentilly with 3 Loops
  • 5 / 35 / 50 miles
  • Buffet lunch
  • Entertainments… Lot of fun and joy

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540 Riders in Lentilly

  • Families, friends
  • Children from schools
  • Personalities
  • Disabled people…

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540 Riders in Lentilly

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  • Many bike clubs from all the regions
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The Wall of Hope

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  • 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”
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Demonstrations in Lentilly

  • More than 10 high level shows
  • Thanks to all artists

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Activities in Lentilly

  • A great success to all activities:
  • Wellness stands and tattoos
  • Firefighter, water scales,Trike trails…

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Host families in Lentilly

  • 26 host families
  • 72 hosted people
  • 22 Americans
  • 50 European

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8 Days: A Strong Commitment

  • Personal investment
  • sharing, joy, pride,

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Emotions, feelings

  • Great solidarity, sharing values, leaving together, camaraderie

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250 Volunteers for the whole event

  • 30 Volunteers in Illkirch, July 1st
  • 22 Volunteers on all stages
  • More than 200 Volunteers in Lentilly

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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
  • n stage cities

BRAVO!!!

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Support from bike clubs also on many stages

  • Solidarity to our riders

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Support from sport personalities and Miss France

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Kids were plenty involved

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BALANCE SHEET

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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

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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

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ACHIEVED OBJECTIVES

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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…

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Success of the Peloton de l’Espoir

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  • 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
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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 !!!

16 October 17 The Peloton of Hope - Philadelphy 39

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THE ADVENTURE CONTINUES

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  • Vend’Espoir: 2018-19 : Descent of the river « Loire » by barge with FA patients, on

foot, with cyclists ▪ Ongoing. FA families from Bordeaux lead the project

  • La traversée de l’Espoir: March 2018

▪ Stéphane Metzger : solo bike race. More than 665 miles

from Strasbourg to Brest

  • AFAF plans to organize week-ends between FA patients on sport

thematic and exchanges of experiences, pleasure

  • RideAtaxia Europe in France/Austria/ Germany

▪ Bike club Lentilly - July 8 2018 ▪ Jakob Mitterhauser - July 2019

  • RideAtaxia Europe crossing France,

Switzerland, Italy ?

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Projects under construction

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Ride Ataxia Europe

  • What could be the RideAtaxia Europe Map
  • To be enlarged !

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LENTILLY (FR)

JULY 7, 2018

WEIN (AT)

JULY, 2019

MUNICH (DE)

JULY, 2019

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THANKS

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  • Kyle, Felicia and all American riders
  • FARA
  • IGBMC with Dr H. Puccio + F. Piguet
  • All the organizing team
  • All the volunteers
  • All riders
  • Lentilly
  • Sponsors + Donors
  • FA patients + their families
  • All associations, artists, athletes…
  • Host families
  • Children
  • Sorry if people have been forgotton

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Thank you all

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Cure FA !!! atchic atchic atchic aie aie aie

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Thanks for your attention

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