Friday, February 20, 2009

2009 Scrapbook Extravaganza benefiting the 1p36 Support & Awareness Annual Conference!

On Saturday, February 7 we had a Scrapbook Fundraiser event to raise money for the 3rd Annual 1p36 Conference that will be held here in Indianapolis. The Conference will be July 31-August 2nd, 2009. The Conference is run 100% by volunteers and the funds used to put on the conference are from donations, fundraisers and sponsorships.

The Scrapbook Extravaganza Fundraiser was a HUGE success! We raised over $1700!! I am continually overwhelmed by everyone's generosity - especially during our current economic times. Many of these women have never even met our Lily and yet they opened up their pocketbooks to donate to our conference. We feel so blessed to have such generous people in our community.

A Heartfelt Thanks goes out to the following sponsors of our event:
  • Jeanne Spaletto and Jill Sutton - Creative Memories Consultants - Donated all of their profits from the sales of scrapbooking supplies to the event. $500 came from their donation alone.
  • McAlister's Deli - Donated Lunch - Sandwiches, Chips, Sweet Tea, Cookies, ice, plates, napkins and silverware.
  • Starbucks - Donated coffee and pastries for the morning.
  • Carmel Lions Club - Donated the space used for our event. We had 30 women sign up this year and we used almost every inch of space!
We are actively taking donations for the conference and looking for sponsors. Please contact me at for any details including where to send donations for the 2009 1p36 Conference.

You too can have a Scrapbook Fundraiser for the 2009 1p36 Deletion Conference!

This Scrapbook Fundraiser is easy to plan and can raise a lot of money in just one day. You should be able to find community businesses willing to donate their space and products for this event. Try local Lions Clubs or Parks and Recreation areas. Some hotels may even be willing to donate if they have an off just depends on the area. You can try to get Lunch and Breakfast provided by community sponsors. We charged a small registration fee - $30 for early bird sign ups and $40 for the rest. Since everything was donated we were able to keep 100% of the money raised for the event. We also had a small raffle of scrapbook items that generated a good amount of money as well. Creative Memories scrapbook consultants are fairly easy to find online and may be willing to donate their profits. It was nice to have their tools and product available all day for those who needed it. I have a nice registration form that you can use - we can just change the information. I also put together 2 boards of pictures of 1p36 children. One board was of Lily - for people who know us ,etc. The other was of several kids from our 1p36 Family. And there you have it! A fundraiser! :)

Please contact me with any questions -

Saturday, February 14, 2009

3 Months in the Making - Lily Climbs a Step!

Yehaaa! Another milestone met!

For the past three months Lily has been trying to scale the single step from our family room up to the kitchen area. What seems like such an easy task for the rest of us, was, and still is, a big challenge for Lily. She kept working at it and finally did it on Thursday of this week!

Many people have asked about Hippo therapy and how it is helpful. This milestone was met the day after we had Hippo. Our PT feels like Hippo has been very helpful and we have only been 3 times! With Hippo Therapy we have PT 3x per week and it has been wonderful for Lily's gross motor skills. On Wednesday in Hippo, the therapist had Lily standing on her horse! It is was like watching a circus act! Also at Hippo they had Lily climbing up onto mats and walking in a special walker. We are thrilled with this therapy and recommend it to everyone.

We are also adding another therapy to our case load. We just got approved through our early intervention program for a Vision Specialist. She will work with Lily on her visual tracking and attention. Lily still does not look at us very well and uses alot of peripheral vision. We are struggling getting her to sign and hope this may help. Our OT and ST were instrumental in getting this needed therapy. We start it next week!

Here is a video of Lily going up the step!

Monday, February 2, 2009

2009 1p36 Deletion Support & Awareness Annual Conference

The 1p36 Deletion Support & Awareness organization will be holding it's 3rd Annual Conference on July 31 - August 2, 2009 at the Embassy Suites in downtown Indianapolis, IN.

This is a wonderful opportunity to meet other 1p36 families and develop friendships that are sure to last a lifetime. Julie and I attended last year's conference was simply wonderful for us as we got to meet so many families that are just like us... with little angels sent to us from heaven. We are so excited about this year's conference, not only because it is in our back yard, but because we look forward to seeing our friends again and meeting even more!

See below the post the planning committee published on the Yahoo! Forum about the conference.

See below the link to the files regarding the conference.

We encourage all 1p36 families to attend the event this summer. Lily cannot wait to see her friends!

Peace, J&J