Sanfilippo Children's Foundation

Sanfilippo Family Retreats

Sanfilippo Family Retreats

For families battling a rare disease, isolation is one of the most commonly expressed challenges. For a disease like Sanfilippo, the experience is unique and difficult for most people to understand the impact on the whole family. It is a life-altering diagnosis – not just for the affected child, but for parents/carers and siblings, and ...

GOAL

$65,000

Australia > NSW > Metro
24/10/2024 > 28/10/2024

Field of Interest

  • Health/wellbeing and medical research
  • Individual/family services and support

Target Population

  • People with a disability, illness or disease
  • Young people (6-25)
Sanfilippo Children's Foundation Sanfilippo Children's Foundation

Sanfilippo Children's Foundation drives research for a world without Sanfilippo syndrome, a genetic childhood dementia with a life expectancy of only 12-20 years of age. Children with Sanfilippo are missing an enzyme that clears waste from the cells in the body, and over time this waste builds up and turns toxic. As damage to the cells occurs, especially in the brain, children lose their language and the skills they've learned, eventually regressing into dementia. It is a heartbreaking condition, and while there are no currently available treatments, there are promising therapies on the horizon bringing hope solutions may be available in the future.

The Foundation supports families by connecting them with researchers and the broader Sanfilippo community, holding family retreats, and giving families a voice on issues that affect them not just in Australia but around the world. Since inception in 2013, the Foundation has directed nearly $8 million into promising research projects, including bringing a clinical trial to Australia and establishing the groundbreaking 'Brain in a Dish' project to develop cell models and test therapies in the hopes of identifying new treatments for Sanfilippo. The Foundation established and leads a global alliance of patient organisations striving towards the same goal - solving Sanfilippo. This collaboration is centred around achieving the goals of the Global Research Roadmap for Sanfilippo Syndrome Therapies developed by the Foundation - a roadmap endorsed globally as the blueprint for delivering rapid solutions to individuals affected by Sanfilippo.

Project Summary

For families battling a rare disease, isolation is one of the most commonly expressed challenges. For a disease like Sanfilippo, the experience is unique and difficult for most people to understand the impact on the whole family.

It is a life-altering diagnosis – not just for the affected child, but for parents/carers and siblings, and has a profound impact on wellbeing, mental health and everyday activities. In partnership with the University of Newcastle’s Family Action Centre, Sanfilippo Children’s Foundation will host a retreat for 10 families affected by Sanfilippo syndrome. This three night retreat provides a unique opportunity for families to connect with other families who completely understand what life is like navigating Sanfilippo, create lifelong memories as a whole family, and be supported through tailored activities as part of the SNUG Respite Family Program developed by the University of Newcastle.

Funding will cover the costs of delivering the family retreat and the travel costs of families to attend.

Project Outcomes

The retreat will give families a unique opportunity to connect with other families in a similar situation, learn from each other, and develop friendships and a support network that will endure far beyond the retreat. Families will be supported in a safe environment designed to meet the needs of the entire family, will take part in activities that are both fun and educational, and will create lasting memories as a family unit. By tailoring this retreat to the specific needs of Sanfilippo families, it is hoped there will be opportunities for respite, along with learning from experts about how to manage different aspects for their child/ren affected by Sanfilippo.

Budget Breakdown

TOTAL BUDGET: $65,000
FUNDING
Funding source Amount
Funding gap (unconfirmed) $65,000
EXPENSES
Expense item Amount
SNUG program costs $37,000
Onsite respite staff $5,000
Travel costs $20,000
Bespoke clinical program costs $3,000

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