sunflowery's Diaryland Diary

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A Bob Update and Plea For Help

Dear Friends and Family,

I am writing to give you an update on Bob. It's been a little over 3 years since he was diagnosed with Facioscapulohumeral Muscular Dystrophy (FSH). A lot of things have changed for Bob since receiving the diagnosis. He lost his job after working his way up the ladder to manager. He was told he should use his electric wheelchair as much as possible, if not all the time because his frame can no longer support his body. His muscles have continued to weaken and degenerate to the point where it is difficult for him to stand up from a sitting or bending position. He can't lift as much as he used to and even a formerly simple thing like pouring milk is a strain on him. He lives with some kind of pain every day and even though he is learning to manage it with the help of the Minneapolis Pain Clinic, it never goes away. He has trouble sleeping due to his pain and most days are difficult for him. However, its not all bad news. He is taking 2 classes though our church's ministry training school and that has helped him keep his mind keen. He has made friends with people in our neighborhood and EVERYONE knows Bob. Those that know him love him and it's so good to know that should anything happen to him while I'm at work, he would be well cared for until I got home. And, most of all, in spite of the continuing muscle weakness, loss of strength and abilities, and pain, Bob continues to mostly be in good spirits. His faith is strong and continues to grow. He is an encouragement to me, our family and friends. He rarely lets this disease or it's affects on his body discourage him. He continues to be a loving and wonderful husband to me and I am honored to have married such a warm, loving and caring man.

If you know Bob at all, you know how hard it is for him to ask for help, although it has gotten a little bit easier for him due to necessity. However, there are two events coming up this summer where you can help, if you've ever wanted to.

The first opportunity is the MDA Stride and Ride on June 18th, 2005. This is an annual fund raiser for MDA research and it includes the R.F. Moeller Dark Socks Classic golf tournament. The Stride and Ride is an hour and a half walk (11:00am - 12:30pm) at the Xcel Energy Center in St. Paul. The Dark Socks Classic is golf tournament fundraiser held the following Monday, June 20th. Both events have helped raise over $150,000 for MDA research in the past.

The second opportunity to help is the Mobility For Independence's Celebrity Fundraiser banquet and golf tournament. The banquet is August 21st at Treasure Island Resort and Casino and the gold tournament is August 22nd at Mt. Frontenac Golf Course. Mobility For Independence is a non-profit organization that helps raise money for people needing assistive mobility devices and vehicles. Bob has been on their list for 2 years, waiting for a handicapped accessible van.

Here's how you can help:


STRIDE & RIDE
Pledge Money to either me or Bob for our walk around the Xcel Energy Center ($62 buys 1 minute of MDA research). We each have a goal to raise $500.
Walk with Team Bob at the Stride and Ride Event. We are looking to create a team of 10 or more. (Each team member gathers their own pledges.)
Collect pledges yourself and donate them to the MDA to find a cure. (There are over 40 different types of known MD with more being discovered every year.)
Check out the MDA website and learn more about the disease and what you can do to volunteer with MDA in your community.
Get a foursome together to golf the Dark Socks Classic. Check out their website for further information on registering.
Contact MDA for more ways you can help. Locally in MN, contact Chris Zupfer at czupfer@mdausa.org and let him know we sent you.

If you decide to pledge money for our walk, you can either make out a check to MDA and mail it to us (email me for an address) or you can visit our Paypal account (the email we use is and make an online donation. If you mail a check, MDA will send you a receipt for tax purposes. If you make an online donation, please include your email address so I can email you a receipt for your taxes.

MOBILITY FOR INDEPENDENCE
Pledge money to either me or Bob for the celebrity fundraiser. All money pledged to us goes directly into Bob's personal fund for a new handicapped accessible van.
Register for the banquet ($40/person or $75/couple) or the golf tournament ($150/golfer) or both!
Sign up for a sponsorship opportunity. Sponsorships range from $50 - $10,000.
Bid on a fabulous prize at the silent auction
Come to the banquet (see costs above) to support Bob. He has been asked to speak and share his story about why he needs a van and what it would mean to him to have that kind of independence.
Check out Mobility for Independence's website for more information on their fundraiser and organization.

If you decide to pledge money to the Celebrity Fundraiser, you can make a check out to Mobility for Independence and send it through the mail or go the Paypal route. Please make sure, if you use Paypal, to identify which option you are pledging to. I can also divide your pledge between both events if you want.

Finally, the best way to help Bob is to continue to do what you've always done, encourage him, love him, pray for him, and remember that he's still the same old Bob you've always known and loved.

Thanks so much for everything you do for us. We love you and continue to pray for you as God lays you on our hearts. We hope to see you at one or both of these events. Have a super summer!

Love,

Amy

9:18 p.m. - Thursday, May. 26, 2005
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