This Thursday May 15th is International MPS Awareness Day. Wear purple to spread awareness of these devastating diseases. Hunter’s school will be having “Hop 4 Hunter“, the whole school will come out to the field and hop three laps. All students were sent home information on Hunters Syndrome and a form to collect donations. All donations will be sent to the National MPS Society and all the children in the school will receive a T-Shirt. We will not stop until a cure is found. Please send us pictures of you wearing purple, supporting Hunter and all the other children fighting MPS daily.
Tammy and Michele traveled to Washington D.C. to attend the Rare Disease Legislative Conference & Lobby Day to help raise awareness of MPS II and other rare diseases. They got a chance to meet with Congressman David B. McKinley to tell him their story about Hunter and the need for support and awareness for him and other children with MPS II. More details coming shortly with details about their experience.
Hope 4 Hunter & Antonio’s Italian Chophouse cordially invites you to enjoy a fine dining experience to help a worthy cause!
Friday March 14th from 5:30pm – 9:30pm, at Antonio’s Italian Chophouse @ 709 Beechurst Avenue, Morgantown WV 26505 (on the lowest level of the Sencea Center).
We’re serving a special, one-time only, drink special – “The Purple Ribbon!”
Reservations Recommended, call 304-241-1139 or visit their website (antonioschophouse.com). Portions of the Proceeds benefit Hope 4 Hunter! Please join us!
Our 2014 Hope 4 Hunter Thirty-One Fundraiser started on February 1st and runs through February 27th. Orders will ship around mid-March.
To access the Event click the link above, or on the image to the right. You’ll need to then click on the “SHOP NOW” button on the Event page in order to ensure your order is associated with the event. Our fantastic Thirty-One consultant, Chasity, donates 100% of her commission back to Hope 4 Hunter.
Make sure to take advantage of the February special – spend $35 and get the new Zip-Top Organizing Utility Tote for $10. If you have never heard of Thirty-One, their products are amazing. I use my Organizing Utility Tote with the Fold N’ File to keep me organized as I travel back and forth to my job as a teacher. I am looking forward to adding the Zip-top Organizing Utility Tote in February.
Wow, yesterday was a very busy day! About three weeks ago, Hunter called his Aunt Dawn to ask what time I was picking him up to take him to the market. His mother informed me that he put his shoes and coat on and was waiting on the sofa for me. I felt so bad that I couldn’t drive over 5 hours down there and pick him up and take him to the Please Touch Museum in Philadelphia. So this weekend Hunter and his mom spent the long weekend with us.
Yesterday we started the day at the Please Touch Museum where Hunter played in the supermarket area for about an hour. We rode the carousel twice. On the second time, Hunter wanted to sit on the bench and go around. My heart melted at the end of the ride when his mom got off the horse and he gave her a big hug and said, “I love you mom.” After spending about two hours we left the Please Touch Museum, parked near the Franklin Institute and walked to lunch. After lunch we went to the Franklin Institute. Hunter got his face painted as Batman, which he calls “Batpack.” His cousins also had to get their faces painted. Hunter is so funny as he bosses everyone around. He told his cousin Lizzy to get “Batpack” so she also got Batman, but in purple. We visited the train area, and walked through the heart. Hunter was exhausted, so we visited the gift shop and then headed to Nana’s house for dinner, where more friends of the family joined us for a nice home cooked meal.
Please enjoy the following slideshow from our busy day:
We have an amazing Thirty-One consultant who has again this year agreed to hold a Thirty-One sale that will benefit the Hope 4 Hunter Prize Bash in May. She donates all of her commission and helps us with free hostess products for the party. Last year, from this sale we were able to get $855 worth of free products and Chasity (our consultant) donated 100% of her commission for the sale which totaled $654.25. This year we are setting our sights higher.
Our party will start on February 1st so you can take advantage of the February special – spend $35 and get the new Zip-Top Organizing Utility Tote for $10. The party will close on February 27th and orders will ship to you around Mid-March. More information will available, along with the link to the party on February 1st.
If you have never heard of Thirty-One, their products are amazing. I use my Organizing Utility Tote with the Fold N’ File to keep me organized as I travel back and forth to my job as a teacher. I am looking forward to adding the Zip-top Organizing Utility Tote in February.
The Hope 4 Hunter organization is pleased to announce that we are beginning the process of becoming a 501(c)(3) non-profit organization. This was a topic that we often had discussed during our meetings over the past year, but the decision was finalized last night. We are excited to begin this new journey. Our organization already currently collaborates with the Hunter Syndrome Foundation Coalition. We will be reaching out to many other organizations and businesses in the next coming months for support. Last year, our first year of fundraising we successfully raised over $10,000 for the National MPS Society, in 2014 we are setting our goal much higher. This year our fundraising focus will be medical research opportunities. If you or someone you know are interested in joining this worthy cause, please contact us. Please stay tuned for more updates on our facebook page, and visit our website at www.hope4hunter.org.
This week we attended “Hits for Hunter” an event sponsored by the WVU boxing club to raise funds and awareness for a cure. Hunter was awarded a special trophy and had a blast running around in the ring and meeting the team. Check out the pictures below from the event.
It is very frustrating to know that a drug is available to help your loved one and you are not eligible to receive it because of FDA regulations. Children with rare diseases do not have time to wait years for the government to cross all their t’s and dot all their i’s. Please read this post from Deb Purcell. Her son receives the new treatment since he was in the first trial, while Jack Fowler and many other MPS boys do not. This post made me cry. Read on to see how you can help.
To read more about Jack’s story, visit: https://