Organization OverviewName of the Organization: Geneviève Saint-Surin Foundation

Creation Date: Febuary 2024

Registered with the Quebec Business Registry: May 2024

 

Mission:

 

The mission of the Geneviève Saint-Surin Foundation is to support families affected by sickle cell anemia by raising awareness about the importance of hydration, providing medical and psychosocial resources, and assisting low-income families and newcomers in managing the disease.

 

Vision:

 

The Foundation aspires to improve the quality of life for people living with sickle cell disease by promoting crisis prevention through better disease awareness, proper hydration, and providing long-term continuous support to families.

 

Values:

 

Empathy: Accompany families with compassion, understanding their challenges and needs.Commitment: Promote awareness of sickle cell disease within affected communities.Collaboration: Work with hospitals, associations, and healthcare professionals to offer coordinated and effective services.Listening: Be attentive to the needs and concerns of families to provide tailored and personalized support.

 

Services / Products:

 

Distribution of reusable 950 ml water bottles to children with sickle cell disease in hospitals to encourage regular hydration.

 

Provide taxi vouchers to facilitate transportation to hospitals, especially for low-income families.

 

Development of a guide to help families monitor symptoms and know what procedures to follow in case of a crisis.

 

Training sessions to raise awareness among families on crisis prevention, nutrition, and the importance of sleep.

 

Referral to specialized services: Helping families access psychological, support, and medical services.

 

Support groups for spouses not affected by the disease, offering resources and practical advice.

 

Implementation of a reimbursement program for transportation costs for families traveling to hospitals outside their region.

 

Nutritional support through consultations with nutritionists to better manage the disease.

 

 

Project Origin and Context

 

The Geneviève Saint-Surin Foundation was born from the personal experience of the Saint-Surin family. Geneviève Viel, diagnosed with sickle cell disease (SS type) at the age of 3, underwent numerous hospitalizations throughout her youth. Now 44 years old and the mother of two children, Mya (10 years old) and Eva (15 years old), who also have sickle cell disease, Geneviève and her husband, Hervé Saint-Surin, decided to establish this organization to support other families facing similar challenges.

 

The project started with the initiative to encourage hydration in hospitalized children by distributing reusable water bottles. However, after the first collaboration with CHEO (Children’s Hospital of Eastern Ontario), the Foundation expanded its mission to include broader support for families affected by sickle cell anemia, recognizing a clear need for additional resources and continuous support.

 

Achievements of the Organization since Febuary  2024

 

Distribution of 830 reusable water bottles in several children's hospitals, including CHU Sainte-Justine and CHEO.

 

More than 1,700 visits to the Foundation's website, which raises public awareness about sickle cell disease and provides key information on managing the illness.

 

Set up an information booth at CHEO to inform families about the available services and provide information on sickle cell disease.

 

Support and guidance to several families, directing them to available services in their region, including medical, psychological, and social services.

 

The Foundation primarily targets:

 

Low-income families, who often cannot afford the high costs associated with managing sickle cell disease. Many families are uninsured, making it even more critical to reduce or ease their expenses.

 

Newcomers, who are often less informed about managing the disease within a new healthcare system.

 

Children and adolescents with sickle cell disease who need specific support.

 

Project Description

 

The Geneviève Saint-Surin Foundation implements several key initiatives aimed at providing comprehensive support to families affected by sickle cell anemia:

 

Awareness and prevention: One-hour training sessions held biweekly to educate families on disease management, including hydration, nutrition, and sleep habits.

 

Symptom guide: Development and distribution of a guide detailing symptoms to monitor, along with procedures to follow in case of a crisis.

 

Family support: Support groups for spouses and family members not affected by the disease, as well as referrals to psychological services.Financial aid:

 

Taxi vouchers for low-income families to access hospital care and reimbursement of travel expenses for medical appointments outside their region.

 

Nutritional consultations: Access to nutritionists for advice and dietary support.

 

Community collaboration: Participation in awareness and education booths throughout Gatineau in partnership with other community organizations.

 

In the long term, the Foundation plans to:

 

Establish a week-long respite camp for families, staffed with medical personnel (doctor, nurse, social worker).

 

Offer home-based physiotherapy services to help children with sickle cell disease maintain mobility and avoid physical complications.

 

Create a support hotline to provide emotional and practical assistance to families.

 

Social ImpactThe Geneviève Saint-Surin Foundation will have a significant social impact by:

 

Improving access to care for families affected by sickle cell anemia, particularly low-income or immigrant families.

 

Supporting crisis prevention by raising awareness about the importance of hydration, proper nutrition, and adequate care.

 

Strengthening community support, offering tailored services and personalized guidance for families.

 

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