cureFA.org
PRESENTING
Le Peloton de L’Espoir
JULY 1 to JULY 8, 2017
About Le Peloton de L’Espoir
Le Peloton de L’Espoir (The Peloton of Hope) is a fundraiser bike ride that will bring together
the European Friedreich’s ataxia (FA) community and the United States FA community on an
8 day ride from Strasbourg, France to Lyon (Lentilly), France.
FA is a rare genetic progressive disease that causes loss of coordination and balance and
impacts patients’ ability to walk, talk, write, and speak; many of the patients will also
develop a severe cardiac condition that results in a shortened life span.
This disease leads to a major motor impairment without affecting mental capacities.
The project was initiated by Dr. Hélène Puccio, Research Head at the Institute of Genetic,
Molecular, and Cellular Biology focused on FA research in Strasbourg, France.
The aim of the laboratory is to better understand mechanisms involved in FA and to develop
innovative therapeutic strategies to correct both the cardiac and the neurological effects of FA.
Dr. Puccio’s lab has a strong connection to the patient community through the United
States patient advocacy group FARA, and the French patient advocacy group
Francaise de l’Ataxia de Friedreich (AFAF).
Goals of Le Peloton de L’Espoir
The event aims to unite the patient community in an empowering physical activity,
draw attention to opportunities to be involved in clinical research through registration
in the Global FA Patient Registry and raise funds for collaborative research grants.
Le Peloton de L’Espoir will also strive to spread FA awareness in France and beyond
the international Friedreich’s ataxia community.
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History of Le Peloton de L’Espoir
A few years ago, Dr. Puccio met Kyle Bryant, a young FA patient who is now 35 years old.
Kyle’s inspiration spurs from his diagnosis at age 17 and the discovery that he could travel
long distances under his own power on a recumbent tricycle. Fueled by the passion to do
more for himself and the FA community, Kyle and his family completed a 2,500 mile bike
ride from San Diego to Memphis to raise awareness and funds for FA research.
That was just the beginning of rideATAXIA. Now functioning as a program of the Friedreich’s
Ataxia Research Alliance (FARA), rideATAXIA offers challenging and family fun bike rides at
locations all across the USA. Kyle became the Spokesperson for FARA in 2009 to empower
patients to live an active lifestyle and to support research.
Kyle and Dr. Puccio had the idea to bring rideATAXIA to Europe to link the French and US
FA communities, engage them in research and to fundraise to support efforts to develop
treatments. As a mother of two children suffering from FA, Anabella Saraiva assumed the
responsibility for coordination of the ride in France. This event will unite not only patients
and their families, but also volunteers, sponsoring companies and advocacy organizations.
The objective is to highlight collaboration, solidarity, and respect for the global FA community.
About AFAF
The Francaise de l’Ataxia de Friedreich (AFAF) was established on 17 January 1980
by Bernard and Clémentine Oddos Verne. AFAF brings together over 900 members including
500 people living with FA. The organization’s objective are • To advance medical research through collaborative funding.
• Promote information about FA.
• Create connections between members.
• Help patients and families in their daily lives through information and networking.
About FARA
FARA focuses on grant making for FA research and building collaborations with organizations
dedicated to advancing treatments for FA. Due to the progressive nature of the disease and
the promise of treatments in development, there is urgency to FARA’s efforts.
Directing attention and resources to FA research and partnering with others that share this
commitment, FARA believes it can help bring forward effective treatments and a cure for FA.
cureFA.org
1 - SATURDAY JULY 1st : Symposium at IGBMC (Strasbourg) sharing of scientific breakthroughs
and FAmily networking and barbecue before the official departure of the ride from the
first stage : Illkirch - Mittelwihr (72 km/45 mi)
2 - SUNDAY JULY 2nd : Mittelwihr - Soultzmatt - Mulhouse (87 km/54 mi)
3 - MONDAY JULY 3rd : Mulhouse - Montbéliard – Guillon les Bains (115 km/71 mi)
4 – TUESDAY JULY 4th : Guillon les Bains – Osselle – Dole (102 km/63 mi)
5 – WEDNESDAY JULY 5th : Dole – Seurre - Chalon sur Saône (98 km/61 mi)
6 – THURSDAY JULY 6th : Chalon sur Saône – Cormatin- Mâcon (74 km/46 mi)
7 – FRIDAY JULY 7th : Macon – Odenas - Lentilly (82 km/51 mi)
8 – SATURDAY JULY 8th : Lentilly (3 routes) 8 km/5 mi, 56 km/35 mi, 80 km/50 mi
The final day - people of all abilities are invited to participate and support FA Research.
The 8km/5mi route is designed for beginners, families, and disabled athletes.
The 80km/50mi route is designed for experienced athletes, and anyone seeking a challenge.
The goal is to challenge yourself, support our patients, and experience an
atmosphere of collaboration.
The 56km/35mi route is designed for anyone in between . . .
After the ride, participants will enjoy great food, music, camaraderie,
and a sense of service and accomplishment.
During the single-day ride in Lentilly on July 8th, we are looking for a partner to help us to provide the opportunity for
people with disabilities to try adaptive cycling equipment. Please reach out if you can help with this.
cureFA.org
Le Peloton de L’Espoir Sponsorship Opportunites
$10,000 : Presenting Sponsor
•
Primary Logo(s) on Le Peloton de l’Espoir 2017 bicycle jersey and event T-shirt.
•
Exposure on event registration website, with a link to your website.
•
Booth space at event start/finish area throughout the day of the ride.
•
Entry registration for up to 10 riders at the Lentilly ride Saturday July 8, 2017.
$5,000 : Gold Sponsor
•
Logo on Le Peloton de l’Espoir 2017 bicycle jersey and event T-shirt.
•
Exposure on event registration website, with a link to your website.
•
Booth space at event start/finish area throughout the day of the ride.
•
Entry registration for up to 6 riders at the Lentilly ride Saturday July 8, 2017.
$2,000 : Silver Sponsor
•
Logo on Le Peloton de l’Espoir 2017 T-shirt.
•
Exposure on event registration website, with a link to your website.
•
Booth space at event start/finish area throughout the day of the ride.
•
Entry registration for up to 4 riders at the Lentilly ride Saturday July 8, 2017.
$1,000 : Bronze Sponsor
•
Name listed as sponsor on event registration website.
•
Booth space at event start/finish area throughout the day of the ride.
•
Entry registration for 2 riders at the Lentilly ride Saturday July 8, 2017.
$ 500 : Friends and Family Sponsor
•
Name listed as sponsor on event registration website.
•
Entry registration for 2 riders at the Lentilly ride Saturday July 8, 2017.
Contact information
In FRANCE
Anabella Saraiva : [email protected] | 06 19 57 82 48
Marie-Claire Joguet : [email protected]
Françoise Piguet : [email protected] | 06 38 61 88 90
Hélène Puccio : [email protected]
In the United States
Kyle Bryant : [email protected] | 916 203 3238