One of our awesome clients is going through something not so awesome recently, and we’d like to lend a helping hand, through the power of blogging and social media share their message. Help us help Taylor & Sam #SavePurnell by sharing this post! Thanks in advance!
-Nick
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From Taylor, Sam & Purnell:
Recently our 1-year-old son Purnell was diagnosed with a rare and fatal genetic disease, called Niemann-Pick Type A (NPA). It's uniformly fatal by the age of 3, and causes severe cognitive decline (like a baby Alzheimer's) typically beginning at age 15-18 months. This Friday Purnell turns 14 months. There is currently no treatment available.
BUT there is a promising gene therapy treatment within reach--it just needs funding. So my husband and I began a campaign <www.gofundme.com> that has gained the attention of local, national, and even international media. To date, we have raised over $500K (including offline donations), but we are racing the clock to reach our goal of $750K by June 30.
All money raised goes directly to the Wylder Nation Foundation, <www.wyldernation.org> the 501c3 non-profit that is funding the gene therapy research. The money we raise goes toward saving not only our son Purnell, but to making treatment available to all babies afflicted with this terrible disease.
From Friday June 23 to Friday June 30, we are launching a massive final push #7days1goal to get to our goal of $750,000 by June 30. There are a TON of ways to help #SavePurnell during these 7 days, and not all of them require money!! :)
SOCIAL MEDIA:
- Facebook Live 14-month Birthday Party
- This is our official #7days1goal launch event.
- The sad truth is we don't know if we will get another birthday with Nell, so we are celebrating every month like it's the big day.
- Please join us on the Save Purnell Today Facebook page <www.facebook.com/SavePurnellToday> on Friday, June 23 at 4:30pm EST to celebrate Purnell's 14-month birthday with us, live from our living room.
- Share the event with your network.
- Six Second Hug Challenge
- Similar to the ice bucket challenge, we're hoping to go viral with videos of people hugging for 6 seconds. Tag 6 friends to post their own six-second hug video or donate $25 to #SavePurnell.
- There is no treatment for Niemann-Pick Type A. The goal of this challenge is to raise awareness of the disease and our efforts to make a treatment available for Purnell and all other babies with this disease.
LOCAL EVENTS:
- Saturday, 6/24: Middlesex Lounge (315 Massachusetts Ave, Cambridge, MA)
- Food and drink for purchase; drink proceeds go to #SavePurnell
- 50/50 raffle
- 6pm-9pm
- Monday, 6/26: West on Centre (1732 Centre St, West Roxbury, MA)
- Neighborhood Nights--10% of all bills with attached coupon will go to #SavePurnell
- 11am-11pm
- Wednesday 6/28: Not Your Average Joe's (111 Pond St, Norwell, MA)
- Not Your Average Cause--just mention #SavePurnell and 15% of the bill will be donated
- 11:30am-10pm
- Thursday 6/29: Wild Rover (61-63 Chatham St, Boston, MA)
- Free apps, dj, some raffle items including Red Sox/Yankees tix, 50/50 raffle
- 6pm-9pm
- Friday 6/30: Blarney Stone (1505 Dorchester Ave, Dorchester, MA)
- Final event of the campaign.
- Free apps, dj, raffle items, silent auction with BINcA students artwork, 50/50 raffle
- 5pm-8pm
ONLINE SHOPPING:
- ONEHOPE wine: Buy wine using link <https://secure.viaonehope.com/MemberToolsDotNet/ShoppingCartv3/MainCart.aspx?PartyID=13492&PartyGuestID=0&RequestedGroup1Code=&RequestedGroup2Code=&ReferringDealerID=822064> and 15% of qualifying purchases will go towards #SavePurnell
- Online auction: Auction will go live on Friday June 23 at 8am EST... some really big items in here! <www.biddingforgood.com/SavePurnellToday>
We are so grateful for the support of the Boston community and beyond. We BELIEVE together we will #SavePurnell!
With Hope Always,
Sam, Taylor, and Purnell
