Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease


Please submit a Prayer  - View or Sign our Guestbook

site map | advanced search

March Update

March Update - Flower Power National Campaign - Volunteer Opp - Save-The-Dates

Posted by Laura Gallo-Hadley at 12:13pm on March 17th, 2010


Dear Family & Friends,

Quite a bit has happened since our last update, so please bear with us on this lengthy update.

Peyton is doing well right now, and his seizures have stabilized with the change in medication. We pray his body continues to respond to the new treatment. He enjoys being at school most of the day, and was recently in the school play, The Wizard of Oz. He was one of the Munchkins, sang some songs, and danced a little jig. I think the best part for him was gathering all the autographs from his schoolmates after the play! Kayla completed her last trip to the NIH for the NAC Trial. She takes her last blood draw in the next week, so we are happy that she can begin NAC full time. She is excited about starting spring soccer and continues to take tap and dance, which she loves.

Flower Power N A T I O N A L  C A M P A I G N - If you are already thinking about Mother’s Day or are planning your landscaping for the spring, please consider purchasing flowers online through Flower Power. They are offering all non-profits 50% of sales from now until April 23, 2010. They have a wonderful strawberry jar, complete with 15 Early Glow strawberry bareroot plants, durable, terra cotta colored strawberry jar, and planting medium all for $30 + shipping delivered direct to you or a loved one. What a wonderful Mother’s Day gift this could be. Please click on the direct link to the Hadley Hope Fund fundraiser at:
http://www.flowerpowerfundraising.com... (cut/paste if needed)

We’d like to thank one of our dedicated board members, Nick Heuertz for setting up this program! This campaign has raised almost $200 already!

Upcoming Events - M E D F O R D
2nd Annual Homemade Spaghetti Dinner & Bingo Night - Friday, May 7, 2010 Please SAVE-THE-DATE for our next event, sponsored by the Knight’s of Columbus from Shepherd of the Valley Church. Enjoy an evening of wonderfully prepared spaghetti, complete with salad, bread, and beverage with exciting games of bingo to follow. The kids enjoy this event tremendously and it is a great time for family and fellowship. Time and details TBA...

Yard Sale for a CURE! - Saturday May 15, 2010 Our yard sale will be held in the Liberty Bank parking lot off Barnett Rd. from 8:00 a.m. – 4:00 p.m., weather permitting. If you or someone you know has sellable items to donate for this fundraiser we would very much appreciate it! Donations can be dropped off at: 102 Clark St. in Medford M-F, from 9-4.
We will need volunteers early the day of the event as well as a few fresh helpers at the end of the sale to help with clean up. Please come out and browse the items for something you might need and join us for a fun day raising funds for a cure!! Contact KC@phlebotomyservices.com and let us know where you would like to help!

Upcoming Events - S A L E M
“Vegas in the Valley” Casino Night - Saturday, June 5, 2010 Since Vegas in the Valley was such a success in Medford this past year, we are planning another one in Salem. Please SAVE-THE-DATE for this fun filled event to be held at the Elk’s Club in Salem. Details to come…

R E S E A R C H / Zavesca U P D A T E – For those interested in finding out what our supporters have funded in the way of research, please click (or cut & paste) on the following links: (Facebook doesn't like you leaving their site. ;-})

- Does Cyclodextrin Cross the Blood Brain Barrier: Files/CyclodexPoster.pdf

- Denial of Approval for Zavesca for NPC in the U.S.:

E X T R A O R D I N A R Y  Measures $10K Sweepstakes Winner Announcement - We'd like to congratulate Jason Rothschild's video to benefit the Rett Syndrome Research Trust. Thank you all for voting for our video.  Even though we didn't win, we're thankful the money went to an organization that will fund research.  Thank you all for you support and please remember to click the I READ THIS button if you read this on our Facebook Causes.


Bryan and Laura Hadley


printer friendly version Printer friendly version

If you have questions regarding the site, please contact the webmaster.
Terms of Use | Designed, Developed, Deployed & Donated using Project A's Site-in-a-Box ©2018