MWS Foundation Update
By Deborah Curry, President
Hello to all of our MWS families.
The Mowat-Wilson Syndrome Foundation Board would like to update you on what the Foundation has been working on during the past year. This newsletter will update you on: research, fundraising, board activities and information on 2016 Conference planning.
RESEARCH
The Mowat-Wilson Syndrome Foundation continues to provide funding for the research project at Kansas University. To date we have funded this project $10,000, and will be contributing $5,000 this month, but much more is needed. Additionally, we are working with Dr. Margaret Adam to establish a medical database for MWS. This database will be accessible to the medical community so that they can search symptoms and treatments. Our hope is to expand our efforts to raise awareness, support research, and provide education about MWS to the medical community and to MWS families. The Foundation is seeking an informatics specialist to help create our database. If you know someone who works in this field please have them contact us.
FUNDRAISING
Our biggest challenge for this upcoming year is fundraising. The Mowat-Wilson Syndrome Foundation is a 501(c)(3) non-profit. Donations are tax deductible for tax purposes. If you or someone you know have experience in fundraising for a non-profit, please have them contact us. We would love to hear your fundraising ideas as well. The Foundation is looking for corporate sponsorships and grant money. You can help us achieve our funding goals in small ways! Many employers, possibly yours, offer gift matching to make your donations to the MWS Foundation even larger. If you shop on Amazon, shop through Amazon Smile! We get a donation for everything you buy if you use the MWS log in at https://smile.amazon.com/ch/46-3884135 . Also, if you use Goodshop or Goodsearch, we receive a donation. Through Goodshop, we receive a percentage of each purchase. On Goodsearch, we receive 1 penny for each search. Here is the link. https://www.goodsearch.com/register?return_path This may not sound like much, but if we all do it, it will add up.
UPDATED WEBSITE
If you haven’t gone to our site in a while, please check it out. www.Mowat-Wilson.org Thanks to the hard work and dedication of multiple board members the website has been updated. Please keep in mind it is a constant “work in progress”. In October the Foundation will add 2 more board members. We are looking for committee members as well. If you have the interest, and the time, let us know.
2016 CONFERENCE
Our annual board meeting was held in Washington, D.C. on June 6th. Board members toured conference venues, hoping to find a fitting location to hold our 2016 conference. We found a location which would be perfect, however, we feel the cost would be prohibitive for our families. With that in mind we are looking at other options, including Kansas City. As soon as a decision is made, an update will be sent out.
WEAR THE MWSF T-SHIRT WITH PRIDE
And just one parting thought. Purchasing a Tee-Shirt, pin or bracelet (or two) to show your support helps raise awareness and funds research for MWS? If you already have, we thank you. If not, please consider doing so, every bit helps. Here’s a link www.mowat-wilson.org/donate2.html. We are in this TOGETHER, we need all the support we can get from the MWS community!
2015 FAMILY BEACH DAY
The IV Annual Family Beach is approaching fast and approximately 20 families are expected to meet in Connecticut, USA. Registration is now closed but we look forward to seeing you in 2016.
The Foundation has important work to do, we need your help and support!
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