SMA Research
January 8, 2004 by · Leave a Comment
More exciting news for SMA research. Hopefully we’ll raise lots of money this year at the fundraiser!!!
Mindy
Dear Members and Supporters of Families of Spinal Muscular Atrophy,Today, Families of SMA made an important announcement. Using compounds identified through previous FSMA-funded research, deCODE’s Chicago-based pharmaceuticals group has completed initial screening and is now working to optimise hits to obtain the best activity and drug like properties. FSMA and deCODE are now hoping to collaborate with other parties in order to make available the necessary chemistry resources to progress other potentially effective compounds through the evaluation process. These services will be made available under the current collaboration that is being funded by FSMA. For more information please see http://www.fsma.org/decode.shtml
Also, registration for the 2004 FSMA Family and Professional Conference is now available on the site. What a great way to warm up a cold winter day! See http://www.fsma.org/confer04.shtmlWishing you all the best for 2004!
Bettylou Ross
FSMA webmaster
http://www.fsma.org
Great News!
January 6, 2004 by · Leave a Comment
Hello everyone:
I am thrilled beyond belief to inform you that we received word today that the insurance company will indeed pay for a power wheelchair for Savanna. As you all know, we had given up and had relinquished to ordering a manual wheelchair because the appeal for a power chair had already been denied twice. We have no idea what transpired; we are just thanking God for the answer to prayer. I would love to think that it was my compelling letter to the Human Resources Department informing them of how they were hindering my child from developing and functioning independently, but know that is truly God’s hand that is in place. I had prayed, along with so many of you, that God would change the hearts and minds of the “decision makers” at the insurance company into reversing their denial. There is nothing more awe-inspiring than answers to prayers.
I am also thrilled to report that after nearly 7 months, we have finally signed a contract on our house. A young couple who just looked at our house on Saturday made an offer this morning and we are scheduled to close January 29th. Our new home should be finished sometime in the next 2-4 weeks, so I am trying to light a fire under everyone’s behind to get our new home done so that we may close on it before we close on this one. We will be installing the flooring in the new home since we wanted to do almost entirely hard surfaces so that the home would be wheelchair friendly. I’m sure most of you can imagine how expensive in upgrades that would have been to let the homebuilder install wood and tile floors throughout the house, so we opted to close on the home with concrete floors and we will install them ourselves. I’m sure Tim would love some help if any of you are available.
I cannot even begin to express my gratitude tonight as I reflect on the blessings of today. It’s almost as if I’m dreaming and someone needs to pinch me. I was reminded last week that after a “season of testing” comes a “season of blessing”. I think we have weathered our season of testing now for about a year and a half and am looking forward to a wonderful season of blessing. Although Savanna was very sick over the Thanksgiving holiday, she was well for Christmas and actually fought off a cold the day after Christmas. As usual, her therapist was just amazed today that she “somehow” seems stronger than when she saw her last, which was about 3 weeks ago. For some reason, she tends to become physically stronger after coming thru an illness. While you typically see SMA children progress in their disease and get weaker, Savanna seems to hold her own and often times, gets stronger.
As always, I thank you all so much for the prayers and support. I am just ecstatic to be able to share such wonderful news and look forward to sharing some more. Tim is still unemployed, so please continue to pray in a great job for him. We are hopeful that something will come along either this week or next. I will be in touch. Hope you all have a great week!
Love,
Mindy
Article in Utah Paper
January 4, 2004 by · Leave a Comment
Hello everyone:
Here is a link to an article that was in a Utah newspaper about SMA. We met the mother, Monica English, and her daughter, Taleah,at the SMA convention in June. I am trying to get in touch with Kathy Cole to see when she plans on having the MDA fundraiser before we set a date for ours. I am thinking mid-September, but will let you know as soon as I get in touch with her. Then I will call SOKOL and get a date reserved. I want to start getting some letters out this month and hitting up some businesses for donations since January is when they seem to decide what they will support for 2004. I will be in touch with you all soon.
Mindy