Moving Forward... Move Forward With Us We moved last October, quickly after we received Ashers diagnosis. Everything at that time was a blur. We were pretty much in shellshock. As I look back on that time there is one thing that stands out - we never set up Ashers room/nursery. It was as if the diagnosis stopped time for us and we were frozen with the fear of losing him so we didnt do the natural things to move on. After celebrating his first birthday in March, and recently watching him achieve some unbelievable milestones, its time to move forward. Needless to say, I am now decorating the room we have affectionately called the playroom to make it Ashers room. God willing he will be around for a long time and he deserves his own special room! Moving forward looks a lot different for us now. We have to constantly think about the next steps for Asher so we know how to manage his needs. He will need things that take a lot of work and time with insurance, and/or a lot of money: therapies, wheelchairs, handicap equipment for the home, handicap vehicle, etc. The list can go on and on. As much as we want to move forward, it is easy to look ahead and become overwhelmed. Check out a few things below to see how you can move forward with us. [[[Fundraisers]]] We would like to dedicate March and October to host fundraiser events for Ashers fight against SMA. Ashers birthday is in March and October is the anniversary month of Ashers diagnosis, so these are forever significant months in our family. If you have any ideas on how we can make some awesome fundraisers possible, please contact me. Perhaps there is a creative way to use a local business to host a fundraiser? Of course, fundraising can happen any time of the year. March and October just stands out for our family. [[[T-Shirt Support/Fundraiser]]] Many SMA families have T-Shirt sales to raise awareness and/or fundraise. We would really like to pursue this idea but dont know where to start. Is there someone in the local community who can donate their time to help us design our shirt or supply the materials? We could probably use some help in general to design promotional materials. [[[Awareness/Support Families of SMA]]] August is National Awareness Month for SMA. Raising awareness of SMA in the general public can help lead to increased resources for SMA research and better care for SMA patients. *The month of August - Jeremy and I will be reaching out to local pediatricians to educate them about SMA. The majority of doctors and nurses do not know about SMA. We want to help make a difference. *Sunday, August 3rd - SMA Awareness Day with the Tampa Bay Rays. The Rays will be taking on the LA Angels with the first pitch at 1:40PM. Tickets are only $14 and a portion of the proceeds goes to Families of SMA. Check out this link for more details: mlb.mlb/tb/ticketing/groups/group.jsp?loc=fsma *Saturday, August 9th - The Annual SMA Candle Lighting. We would like to host the first Lakeland event to join families and SMA organizations around the country by lighting a candle at sunset to remember those SMA Angels who have lost their battle with SMA or honor our SMA children still fighting the disease. *Saturday, November 15th - Sixth Annual Walk-N-Roll at Lake Parker Park (Osprey Pavilion, Gate #4 off Robson Road) in Lakeland. We would love a huge group to turn out to support Asher and Families of SMA. Wouldnt it be great if we had a team t-shirt for everyone supporting Asher??!! About Families of SMA Families of Spinal Muscular Atrophy (FSMA) is dedicated to creating a treatment and cure by: funding and advancing a comprehensive research program; supporting SMA families through networking, information and services; improving care for all SMA patients; educating health professionals and the public about SMA; enlisting government support for SMA; embracing all touched by SMA in a caring community. Families of SMA funds and directs the leading SMA research programs. Successful results and progress from basic research to drug discovery programs to clinical trials provide real hope for families and patients. Families of SMA is a non-profit, 501(c)3 tax exempt organization with 29 Chapters throughout the United States. Additional information about FSMA can be found at curesma.org.
Posted on: Tue, 01 Jul 2014 10:45:42 +0000
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