To All Visitors: Our Guestbook is working Again!!! Please sign our Guestbook. Sign it as many times as you would like! We love hearing from you!!

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The Moms Club of Western Suffolk is sponsoring a fundraiser from 11:00 AM to 3:00 PM at the VFW Hall located at 55 Lake Shore Road in Ronkonkoma. There will be door prizes and vendors from Pampered Chef, Lia Sophia, Shaklee, Discovery Toys and more. Proceeds will benefit the Grace Peshkur Foundation. Call Michelle at 631-766-4122.

A Bike Run will take place prior to this event. Sign-up and registration is at Segesta Pizza on Wantagh Ave in Levittown, 1 1/2 miles north of Southern State and 3/4 miles south of Hempstead Turnpike. Sign-up is from 8:00 AM until 10:00 AM. Kickstands up at 10:30 AM sharp! The cost is $10.00 to ride and $5.00 per person. The end point is the VFW Hall on Lake Shore Road in Ronkonkoma. The bike run is called the "Saving Grace Run."

Sunday, March 16th, 2008:

From 8:00 AM until 11:00 AM at St. John's Lutheran Church of Holbrook, the Helping Hands Ministry is holding a Pancake Breakfast for Grace. The cost is $5.00 for adults and $3.00 for children under 12.

Please support these fundraisers! A lot of hard work has gone into them. We thank all those involved. It is because of other peoples' kindness that Grace gets the care she needs. We are so blessed to live in such a wonderful community!

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Thank you to Full Throttle Magazine for their time and kindness. Please pick up a March and April issue. They are taking care of the Bike Run on March 15th. Grace is in both issues. Thank you for raising awareness for Epidermolysis Bullosa. You are truly SAVING GRACE!

We appreciate everyone's participation and helping us spread awareness of Epidermolysis Bullosa and raising funds for research and making a positive quality of life for Grace and her friends. Thank you.

Love, Karen, Michael and Grace

May 28th, 2007 Update: Exciting events are now in planning for the Epidermolysis Bullosa Awareness Week. EB is set to receive a substantial boost in public awareness with the upcoming "Walk a Mile in My Shoes Relay-Rally" in response to new laws proclaiming the last week of October, "National Epidermolysis Bullosa Awareness Week." The inaugural campaign is being organized by EB advocate Gena Brumitt Gruschovnik, whose mother had a severe recessive form of the condition. Lillian Ann Barbrey (nee Brumitt) died from EB-related complications in 2000. The campaign will begin in New York on October 25th, and end in California on October 31st.

The objective of the "Walk a Mile in My Shoes" campaign is to create a culture of advocacy, including:

1. A relay from October 25-31, wherein participants will traverse secondary roads across America from New York to California--walking, running, wheeling, biking, driving, and displaying EB awareness campaign messages,

2. Rallies and press conferences in each day's destinations, to include stops in Pennsylvania, Ohio, Kansas, Colorado, Utah, Nevada and finally, California.

3. Donations to the two primary nonprofit organizations, via a Network for Good website charity badge, which can be accessed now; and

4. Associated spin-off community campaigns, relays, and rallies across America.

For more information, please visit the EB Relay website at http://www.ebrelay.org. You may also want to to contact the media coordinator, Gena Brumitt Gruschovnik at gena@ebrelay.org or by phone at 519-641-9034.

Please tell all your friends about this event and the EB Relay website. Thanks for all of your love and support!

Love, Michael, Karen and Grace

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Jan 16th, 2007: Grace has had a busy couple of months. We moved back to Holtsville. Our new house is beautiful! We thank EW Howell and AML Architecture for the time and love they put into building a dream house. We are truly blessed to have a wonderful community who cares so deeply for Grace. We enjoyed Christmas and made special memories. Thank you all for this gift.

We are all excited that the EB bills were passed by Congress. The last week in October will be National EB Awareness Month. We thank Poppie for all his hard work. We also thank Congressman Bishop, Senator Schumer and Senator Clinton. This is a giant step for EB! We are on our way to a cure.

Grace's disease has progressed since our last update. We went to Ohio over the New Year. Grace needed a dilation. She also had two strictures. Our friend, Dr. Azzizkhan, operated and Grace is eating again. She says he is magic just like Santa! While she is eating some, her medications are not being absorbed into her little body. She is now taking injections a couple of times a day to help with her pain and itch. The condition is not reversible. The next stage is that her food will not be absorbed. She is weak and very frustrated. The disease has taken over and we are watching Grace struggle with day-to-day activities.

Grace is home most of the time except when she visits the doctors. Please come by and visit; our door is always open. Grace loves company. Family and Friends are what means the most in life and making those memories that will last a lifetime.

We thank you all for all the support and prayers. Please keep up the awareness and prayers for a cure. To watch your child in constant pain and so frustrated breaks our hearts and leaves us feeling empty. We need a miracle!

We recently had our nursing cut by the insurance company. Donna, our angel, is now only coming 3 full days and a visit on the other two. We are fighting with the insurance company but it will take time. Please pray that they give back those hours so that Grace can get the care she needs and so Mommy and Daddy can be just that. We thank Donna for all she is doing to keep Grace as comfortable as possible.

We wish we had better news but that is the nature of this disease. Please continue to support this cause!

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We now accept credit card donations online. If you would like to make a donation now to the Grace Peshkur Foundation, Inc., please click here! Thank you for your generosity. All Donations and Gifts to the Grace Peshkur Foundation are not tax deductible.

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Please click here for past notes of Grace's health in the Medical Diary section.

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Grace Catherine Peshkur was born on March 29th, 2002 with a rare, devastating genetic disease. She has the worst possible form of Epidermolysis Bullosa (Recessive Dystrophic). Her condition is so rare that the medical community has difficulty treating it at times.