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Angel Gala - Nov 2009 |
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A great video was produced for this event. Please click the link below to
access the YouTube version.
http://www.youtube.com/watch?v=U0Rr1uJrV14 |
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SMA Education Day - Aug
2009 |
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SMA Education Day at the U of Wisconsin with Dr.
Mary Schroth and other SMA experts, Aug 15, 2009.
Videos are now available of this webcast event - see
list below. If you have comments, please pass them on to
Kate Kowalski at
kmkowalski@pediatrics.wisc.edu
Title: SMA_Schroth
Duration: 01:12:39 Disk usage: 48669.9 KB URL for Viewing:
http://wisc.na4.acrobat.com/p75576362/
Title: SMA_Patterson-Kienitz
Duration: 01:07:27 Disk usage: 56756.9 KB URL for Viewing:
http://wisc.na4.acrobat.com/p35932398/
Title: SMA_Marcus
Duration: 00:35:54 Disk usage: 31926.2 KB URL for Viewing:
http://wisc.na4.acrobat.com/p40422847/ |
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Clinical Trials for Type 1 SMA
children - January 24, 2009 |
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The Detroit and Montreal Project Cure SMA sites are currently recruiting for
the Clinical Trial of Valproic Acid and Carnitine in Infants with SMA Type I.
For more information about this trial, please see
Carni-Val Type I trial . For information on more clinical trial
opportunities, see the
FSMA-US
Clinical Trials list. |
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Canada's Registered Disability Savings Plan
(RDSP) - updated February 13, 2009 |
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Note: The deadline for opening an RDSP and making contributions for 2008
has been extended to March 2, 2009. A Registered Disability Savings Plan (RDSP) is intended to help parents and
others save for the long-term financial security of a person with a severe
disability. In general, any person under the age of 60 who is eligible for the
Disability Tax Credit and resident in Canada can establish an RDSP. If the
person is a minor, their parent or legal representative may establish the RDSP
for their benefit. See the
Human Resources and Social Development website for more details.
The federal government will match contributions according to the table
below.
From
HRSD site:
"Canada Disability Savings Grant is a supplement
that the Government of Canada contributes to a Registered Disability Savings
Plan (RDSP). Depending on the beneficiary’s family income and contribution
level, the Government may grant up to $3 for every $1 in contributions received
by an RDSP in a year, to a maximum of $3,500. The lifetime grant limit is
$70,000. A Canada Disability Savings Grant can be paid into an RDSP on a
contribution made to the beneficiary’s RDSP by December 31 of the year the
beneficiary turns 49 years old.
| Beneficiary’s family income |
Grant |
Maximum |
| $75,769* or less |
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| on the first $500 |
$3 for every $1 contributed |
$1,500 |
| on the next $1,000 |
$2 for every $1 contributed |
$2,000 |
| More than $75,769* |
|
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| on the first $1,000 |
$1 for every $1 contributed |
$1,000 |
*The beneficiary family income thresholds are
indexed each year to inflation. The income thresholds shown are for 2008."
Contact your financial institution to see if they offer a plan - while this
initiative was announced in 2007, actual plans were not generally available
until December 2008.
(FSMAC does not recommend nor endorse these particular plans nor
institutions - these links are provided for your convenience and information
only.) |
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Improved Survival Rates for Type 1 SMA
- posted April 9, 2008 |
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Researchers at Columbia University (New York) using data from the Indiana
Registry (which was begun and funded by FSMA) analyzed treatment and survival
data for 143 children with SMA Type I. Their research was published in the
November 13, 2007 issue of Neurology. They found that the probability of
survival to age 2 for children with SMA1 between 1980 and 1994 was 30.8%. For
children with the same diagnosis between 1995 and 2000, the likelihood of
surviving to age 2 was 73.9%. For those surviving to age 4 of the same group
born between 1980 and 1996 had a probability of 26.2% while for those born
between 1995 and 2006, the probability was 65.1% The study indicated that
"the improved survival time is due to more widespread use of noninvasive
assisted ventilation, cough assist and gastronomy tube feeding, as well as a
change in attitude about aggressive treatment of children with severe SMA
because of increased optimism about future treatments." (See
article abstract.)
For more information on the care of children with SMA, please see
Journal of Child Neurology issues special edition on SMA
below. |
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2nd ANNUAL ANGEL GALA FOR SMA -
posted January 17, 2008 |
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On November 17, 2007, we hosted the 2nd Annual Angel Gala for SMA at the
elegant Glencairn Golf Club in Milton, ON. The purpose of our event was to
raise funds for research to find a potential cure or treatment for Spinal
Muscular Atrophy, a devastating neuromuscular disease which affects our
daughter, Rebecca.
The 250 guests in attendance decided to do something to help and we were
able to raise a whopping $60,000! This brings our two year total raised
at the Angel Galas to $112,000. All funds go to the charity Families of
SMA Canada (FSMAC) and are then distributed among designated Canadian SMA
Research Projects.
The night was an unmitigated success! There were 216 items in the Silent
Auction that were donated by local businesses, friends, family and neighbours.
For the second year in a row, our entertaining Live Auctioneer, Ray Veeneman,
raised $11,000 in 11 minutes.
Auntie Louise kept the audience spellbound with her powerful speech about
our “Ordinary Miracle”, Rebecca. Dan Whelan captured the essence of Rebecca’s
life in his poignant Video presentation, so much so that The Running Room is
considering using it for a National Marketing Campaign.
Rebecca’s video can be viewed on You Tube by going to
www.rebeccarun.com and clicking “A
Video Update on Rebecca” under Rebecca Run News or
http://www.youtube.com/watch?v=jGxAbS7bxt0
We have a very dedicated Volunteer Committee comprised of aunts, friends and
neighbours who want to see Rebecca get better. We can’t discover the cure
ourselves but we can raise money to help scientists and doctors find it. Thank
you for giving so generously.
Together we are finding a cure.
Sincerely,
Theresa Van Fraassen
P.S. Our 3rd Annual Angel Gala for Spinal Muscular Atrophy will be held at
Glencairn on Saturday November 15, 2008. Hope to see you there!
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Journal of Child Neurology issues special edition on SMA -
August 30, 2007
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The articles in the August 2007 issue are based on the SMA symposium at the
Child Neurology Society meeting last fall which was co-funded by Families of
SMA. At this link you can see the list of titles and authors (which included
Canadians) for the special SMA issue at JCN.
http://jcn.sagepub.com/content/vol22/issue8/ and also
Consensus Statement for the Standard of Care in SMA (full version pdf
available as a free download from JCN) The Standard of Care document is not a
substitute for consultation with medical professionals.
This document presents guidelines for care, but individual circumstances
will guide treatment decisions in each patient's case. Just as each patient is
unique, no single document can have all of the answers.
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