an update from the sanfilippo children's foundation · people lead by sanfilippo parent carl s...
TRANSCRIPT
Sanfilippo Childrens Foundation shy Quarterly Newsletter View this email in your brow ser
An Update from the Sanfilippo Childrens Foundation
On the eve of the Sanfilippo 1000 shy Big Feet for Little Feet (Run and Cycle) challenge
were full of renewed hope and energy for the challenges ahead More than 50 runners
(a long list of extraordinary people) will be running in relay teams in the Surf Coast
Century along the Great Ocean Road on the 3rd Sept mdash my husband Allan and I
included
On the other side of the globe at exactly the same time a group of equally passionate
people lead by Sanfilippo parent Carl S Kapes as well as the CEO of Abeona
Therapeutics Timothy J Miller PhD will be climbing Mt Rainier in Washington State in
the USA Two physical challenges worlds apart but with the same mission to raise
desperatelyshyneeded funds for Sanfilippo research
Please watch this short video about Rally on Rainier
Megan Donnell and the Sanfilippo Childrens Foundation Board
Subscribe Share Past Issues Translate
With gratitude
Global Scientific UpdateAccelerating research towards a cure for Sanfilippo
Great progress has been made in recentmonths Read on for a roundshyup on genetherapy news enzyme replacementtherapy progress and an update on ourFoundations research fundingprograms READ MORE
St George Foundation Foundation wins grant to help our little dragons soar
In July we received a grant of $42500 toimplement a program to support the workof the Sanfilippo Childrens Foundationthanks to the St GeorgeFoundation READ MORE
Sanfilippo 1000Big Feet for Little Feet is coming
55 runners 10 cyclists and more than1000 kms ndash all in the name of Sanfilipporesearch The countdowns on for nextmonths Sanfilippo 1000 shy Big Feet forLittle Feet Surf Coast Century challengeand cycle event Come cheer us on orDONATE at wwwsanfilippoorgausf1000shy2016 READ MORE
Become a Star for SanfilippoAnnouncing our regular giving campaign
Subscribe Share Past Issues Translate
Were delighted to announce the launchof the Sanfilippo Childrens Foundationsregular giving program Stars forSanfilippo We invite you to become astar and sign up for a monthly gift to helpfund critical research projects as westrive for a brighter future for children withSanfilippo READ MORE
Tax Campaign We Say Thank YouOur 2016 EOFY campaign raised significant funds
An enormous thank you to everyone whodonated to our recent End of FinancialYear tax appeal With your help we raised$53185 vital research dollars Thismoney will fund critical research programsand grants Imagine if it funds the projectthat finds a cure or even reverses thedevastating effects of Sanfilippo Thankyou to our community of supporters foryour generosity
Introducing Two New SAB MembersScientific Advisory Board expands
We are delighted to have two newadditions to the Sanfilippo ChildrensFoundations esteemed ScientificAdvisory Board Professor Ian Alexanderand Professor David Ryugo
Professor Ian Alexander is the head ofthe Gene Therapy Research Unit a jointinitiative of Sydneys Childrens HospitalNetwork and the Childrens MedicalResearch Institute in Sydney ForProfessor Alexanders bio READ MORE
Professor David Ryugo is a Professor ofNeuroscience at the Garvan Institute of
Subscribe Share Past Issues Translate
Medical Research in Sydney He is also aConjoint Professor School of MedicalSciences at the University of New SouthWales and a Professor Emeritus JohnHopkins School of Medicine BaltimoreUSA For Professor Davids bio READMORE
Welcome Research Manager Kristina ElvidgeWe have a new face at the Foundation
Dr Kristina Elvidge began her career as amedical researcher later moving from thelaboratory into the realm of sciencecommunication Kristina has joined theSanfilippo Childrens Foundation on apartshytime basis as our ResearchManager For more on her role and herthoughts on the rare disease landscapeplease READ MORE
Fundraising StoriesTales from the fundraising frontshyline
Sumptuous Sounds Fusion offood and music a true hit
READ MORE
Tough Mudder a muddy successin Brisbane
READ MORE
Subscribe Share Past Issues Translate
Mundine supports Hope for Jacobgarage sale fundraiser
READ MORE
MAKE A DIFFERENCE
PO BOX 475Freshw ater NSW 2096
Australia
1800 664 878infosanfilippoorgau
unsubscribe from this listupdate subscription preferences
Subscribe Share Past Issues Translate
With gratitude
Global Scientific UpdateAccelerating research towards a cure for Sanfilippo
Great progress has been made in recentmonths Read on for a roundshyup on genetherapy news enzyme replacementtherapy progress and an update on ourFoundations research fundingprograms READ MORE
St George Foundation Foundation wins grant to help our little dragons soar
In July we received a grant of $42500 toimplement a program to support the workof the Sanfilippo Childrens Foundationthanks to the St GeorgeFoundation READ MORE
Sanfilippo 1000Big Feet for Little Feet is coming
55 runners 10 cyclists and more than1000 kms ndash all in the name of Sanfilipporesearch The countdowns on for nextmonths Sanfilippo 1000 shy Big Feet forLittle Feet Surf Coast Century challengeand cycle event Come cheer us on orDONATE at wwwsanfilippoorgausf1000shy2016 READ MORE
Become a Star for SanfilippoAnnouncing our regular giving campaign
Subscribe Share Past Issues Translate
Were delighted to announce the launchof the Sanfilippo Childrens Foundationsregular giving program Stars forSanfilippo We invite you to become astar and sign up for a monthly gift to helpfund critical research projects as westrive for a brighter future for children withSanfilippo READ MORE
Tax Campaign We Say Thank YouOur 2016 EOFY campaign raised significant funds
An enormous thank you to everyone whodonated to our recent End of FinancialYear tax appeal With your help we raised$53185 vital research dollars Thismoney will fund critical research programsand grants Imagine if it funds the projectthat finds a cure or even reverses thedevastating effects of Sanfilippo Thankyou to our community of supporters foryour generosity
Introducing Two New SAB MembersScientific Advisory Board expands
We are delighted to have two newadditions to the Sanfilippo ChildrensFoundations esteemed ScientificAdvisory Board Professor Ian Alexanderand Professor David Ryugo
Professor Ian Alexander is the head ofthe Gene Therapy Research Unit a jointinitiative of Sydneys Childrens HospitalNetwork and the Childrens MedicalResearch Institute in Sydney ForProfessor Alexanders bio READ MORE
Professor David Ryugo is a Professor ofNeuroscience at the Garvan Institute of
Subscribe Share Past Issues Translate
Medical Research in Sydney He is also aConjoint Professor School of MedicalSciences at the University of New SouthWales and a Professor Emeritus JohnHopkins School of Medicine BaltimoreUSA For Professor Davids bio READMORE
Welcome Research Manager Kristina ElvidgeWe have a new face at the Foundation
Dr Kristina Elvidge began her career as amedical researcher later moving from thelaboratory into the realm of sciencecommunication Kristina has joined theSanfilippo Childrens Foundation on apartshytime basis as our ResearchManager For more on her role and herthoughts on the rare disease landscapeplease READ MORE
Fundraising StoriesTales from the fundraising frontshyline
Sumptuous Sounds Fusion offood and music a true hit
READ MORE
Tough Mudder a muddy successin Brisbane
READ MORE
Subscribe Share Past Issues Translate
Mundine supports Hope for Jacobgarage sale fundraiser
READ MORE
MAKE A DIFFERENCE
PO BOX 475Freshw ater NSW 2096
Australia
1800 664 878infosanfilippoorgau
unsubscribe from this listupdate subscription preferences
Subscribe Share Past Issues Translate
Were delighted to announce the launchof the Sanfilippo Childrens Foundationsregular giving program Stars forSanfilippo We invite you to become astar and sign up for a monthly gift to helpfund critical research projects as westrive for a brighter future for children withSanfilippo READ MORE
Tax Campaign We Say Thank YouOur 2016 EOFY campaign raised significant funds
An enormous thank you to everyone whodonated to our recent End of FinancialYear tax appeal With your help we raised$53185 vital research dollars Thismoney will fund critical research programsand grants Imagine if it funds the projectthat finds a cure or even reverses thedevastating effects of Sanfilippo Thankyou to our community of supporters foryour generosity
Introducing Two New SAB MembersScientific Advisory Board expands
We are delighted to have two newadditions to the Sanfilippo ChildrensFoundations esteemed ScientificAdvisory Board Professor Ian Alexanderand Professor David Ryugo
Professor Ian Alexander is the head ofthe Gene Therapy Research Unit a jointinitiative of Sydneys Childrens HospitalNetwork and the Childrens MedicalResearch Institute in Sydney ForProfessor Alexanders bio READ MORE
Professor David Ryugo is a Professor ofNeuroscience at the Garvan Institute of
Subscribe Share Past Issues Translate
Medical Research in Sydney He is also aConjoint Professor School of MedicalSciences at the University of New SouthWales and a Professor Emeritus JohnHopkins School of Medicine BaltimoreUSA For Professor Davids bio READMORE
Welcome Research Manager Kristina ElvidgeWe have a new face at the Foundation
Dr Kristina Elvidge began her career as amedical researcher later moving from thelaboratory into the realm of sciencecommunication Kristina has joined theSanfilippo Childrens Foundation on apartshytime basis as our ResearchManager For more on her role and herthoughts on the rare disease landscapeplease READ MORE
Fundraising StoriesTales from the fundraising frontshyline
Sumptuous Sounds Fusion offood and music a true hit
READ MORE
Tough Mudder a muddy successin Brisbane
READ MORE
Subscribe Share Past Issues Translate
Mundine supports Hope for Jacobgarage sale fundraiser
READ MORE
MAKE A DIFFERENCE
PO BOX 475Freshw ater NSW 2096
Australia
1800 664 878infosanfilippoorgau
unsubscribe from this listupdate subscription preferences
Subscribe Share Past Issues Translate
Medical Research in Sydney He is also aConjoint Professor School of MedicalSciences at the University of New SouthWales and a Professor Emeritus JohnHopkins School of Medicine BaltimoreUSA For Professor Davids bio READMORE
Welcome Research Manager Kristina ElvidgeWe have a new face at the Foundation
Dr Kristina Elvidge began her career as amedical researcher later moving from thelaboratory into the realm of sciencecommunication Kristina has joined theSanfilippo Childrens Foundation on apartshytime basis as our ResearchManager For more on her role and herthoughts on the rare disease landscapeplease READ MORE
Fundraising StoriesTales from the fundraising frontshyline
Sumptuous Sounds Fusion offood and music a true hit
READ MORE
Tough Mudder a muddy successin Brisbane
READ MORE
Subscribe Share Past Issues Translate
Mundine supports Hope for Jacobgarage sale fundraiser
READ MORE
MAKE A DIFFERENCE
PO BOX 475Freshw ater NSW 2096
Australia
1800 664 878infosanfilippoorgau
unsubscribe from this listupdate subscription preferences
Subscribe Share Past Issues Translate
Mundine supports Hope for Jacobgarage sale fundraiser
READ MORE
MAKE A DIFFERENCE
PO BOX 475Freshw ater NSW 2096
Australia
1800 664 878infosanfilippoorgau
unsubscribe from this listupdate subscription preferences
Subscribe Share Past Issues Translate