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February 2017
Warm greetings to all of our Newsletter readers and their families! I hope you have been enjoying this newsletter and that you find the information here helpful for your family. We plan on sending a newsletter quarterly to keep you up to date on what’s going on with the foundation, as well as interesting topics, conference and meeting information. The Board of Directors decided that we needed to become more visible to you all, hence the new “Message from the Board” feature. Every quarter, a member of the board will have an opportunity to share about themselves and also share a message from their heart. Enjoy it!
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Over twenty families have already registered for the conference this Summer in Washington D.C.! We already have almost 50 rooms reserved at the hotel! Don't wait to book your room. We have a limited amount of rooms blocked at the discounted conference rate.
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Join us for two days filled with lectures, workshops, Q&A sessions and activities for parents, individuals with Mowat-Wilson Syndrome and siblings. Guest speakers include Dr. David Mowat and Dr. Margaret Wilson among many other specialists that will speak on topics that affect most families like: Bowel Management, Mobility, Adaptive Technologies, Advocacy, Grieving and Stages of Acceptance, Epilepsy, etc. It will be a great opportunity to meet other families and exchange experiences!
Complete information and registration at mowat-wilson.org/2017conference
Early Registration savings ends March 31, 2017. Registration closes May 31, 2017 or when we reach full capacity.
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MESSAGE FROM THE BOARD
February Spotlight: Karen Baer, Secretary
 My name is Karen and I have a seven year-old granddaughter, Addison, with MWS. I live in Houston, Texas and Addison lives 80 miles up the road in College Station. My daughter, Stacey, my son-in-law, Jason, my husband, Michael and I were fortunate to attend the first Mowat-Wilson Syndrome Family Conference in 2014. My first reaction was overwhelming: these kids looked just like Addison! And I immediately fell in love with every one of them! I approached the Board after that conference and offered to help in any way I could. In the Fall of 2014 I was offered a position on the board and have been active with the foundation ever since. If you attended the Northwest Medical Forum in Seattle last October, we surely met! I am a retired Registered Nurse. I have a master’s degree in Nursing of Children. My clinical love, however, was labor and delivery. I retired in 2009. That is because I believe that God was getting me ready to be Addison’s grandmother.
My daughter, Stacey, has always been known for her extreme dislike of anything medical. Hence, I was always “shushed” when talking about my day at work while eating dinner when she was growing up. In the beginning I attended every doctor appointment and slept in the hospital during every overnight stay to be a buffer between the medical staff and my daughter. Now, seven years later, she jokingly refers to herself as “Dr. Mom!” I am aware that MWS includes a wide range of abilities, disabilities and medical challenges. Addison is probably on the more severe, more fragile end of the curve. So, I can actually say that I have seen, been there, done that with almost every complication and condition known to MWS. I am saying this because I am always available to talk to, brainstorm with, and just listen to anyone in our MWS family. You can find my contact information on our website. I am looking forward to meeting everyone at the 2017 Family Conference in Washington, DC!
My heartfelt message:
I was a nurse for 32 years. I always concentrated on the care of the patient/family. I never had to worry about money. After all, if you needed to make a copy, the printer was there. If you needed a dressing, you just got it out of the storage closet. Well, I found out rather quickly that a brand new charitable foundation does not work that way!! There are currently eleven board members, and four of them are married to each other (two and two!). Everything we do, everywhere we travel, we do at our own expense, gladly. We did not, do not, and will not want any compensation for our time and effort doing the work of the foundation. However, we still need money to cover the cost of maintaining a foundation (postage, insurance, meeting and conference fees, etc.) I bet many of you thought that conference registration fees covered the cost of the conference! Wrong—the foundation will cover approximately half of the cost. So, how are we going to pay for that? This, my friends, was my director of the board wake-up call!!
Board members are tasked with fundraising!! What!?? I really think I was told that before I signed on, but my brain did not process what that meant. So, right now I probably don’t have many friends—just joking! For the past two years I have personally sent out fundraising letters to everyone on my Christmas Card list, everyone I play bridge with, everyone in my Sunday School class, and every other person that I have spoken to in the past two years if I know their last name and address. So, my little circle of friends has been exhausted. Every board member has done the same! Together, we have raised over $85K (just us moms, grandmas and grandpas!) We need to keep the funds coming. We have donated $20K for basic research on MWS at Kansas University Medical College. Almost all the money not spent in research has gone or will go to family conferences, medical forums and regional events. We want to plan more regional and national events. I know you want to see the foundation become a strong, solid organization. We need your help! I would love for every MWS family to have the opportunity to join our fundraising efforts. How, you say? Easy. Get out you old Christmas card list or email addresses. Contact me or anyone on the board, and we will send you a downloadable fundraiser letter that has already been tried and tested from our foundation President, Susan Triunfo. It will look official (The MWS Foundation Logo, etc.) and it has all of the info needed on how to donate to the foundation. Just add a line or two about your child/family. If many of you could take the time to do this, it would be a huge benefit for all of us and our sweet, smiling kids. This message comes from my heart, and I thank you for taking the time to read it!
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“As is true for many rare genetic conditions, our ability to collect clinically relevant information that can help physicians provide excellent patient care is limited because each provider has only a small number of patients with the condition. Therefore, to further our knowledge of the breadth of the condition requires engagement of the involved community and a platform in which information can be securely and accurately entered and curated. This in turn will allow expert clinical researchers to extract important information and identify rare complications that will aid physicians who care for individuals with MWS.”
A recap of the participation data through January 31, 2017 shows:
- 64 registrations
- 50 Background surveys completed and 6 in progress
- 47 Maternal Information surveys completed
- 24 Genetic Information surveys completed and 20 in progress
- Information shared from individuals in 11 different countries
The MWS Foundation wants to extend a big “thank you” to those who have gotten involved in the process of sharing their data. We also want to ask that if you have started the process but have not completed any of the first 3 surveys to please do so. Our plan is to begin adding additional, condition specific, surveys with the next few months. The first 2 of those additional surveys will be for Gastrointestinal issues and seizures.
You can find registry FAQs and a link to the registry itself on mowat-wilson.org/registry
If you have not yet begun the process, we ask that you please consider getting involved by sharing your data…Because we don’t know what’s possible.
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RARE DISEASE DAY
February 28, 2017
Rare Disease Day takes place on the last day of February each year with the goal to raise awareness about rare diseases and their impact on patients' lives. The Mowat-Wilson Syndrome Foundation invites you to honor this very special day on February 28th.
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We have prepared two fun ways to celebrate RARE Disease Day on Facebook and we hope all families can join us!
- Add a MWSF banner to your existing profile photo
- Display your child's photo with MWS pride. We will use the photos from last year's campaign to generate new cards for the families. All photos will be available for download on our Facebook photo gallery.
Feel free to contact Laura Chrysostomo by e-mail if you can't find your photo in the photo album. Photos will be upload in the next couple of days.
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