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bensdream

  1. tuesday 5/15 is international mps awareness day - remember, thank & rededicate! 5:04 AM May 15th via web
  2. elisa linton life & 18th birthday inspiration in @torontostar about family quest to cure #sanfilippo: thestar.com/specialsection… 2:00 PM May 11th via web
  3. #sanfilippo dad matt mcneil puts his hope for his kids struggle with this disease into new adventure book: benbeesleybook.com 2:14 PM May 1st via web
  4. 4/24 webinar to learn about legislative advocacy hosted by @mpssociety, details at: us1.campaign-archive1.com/?u=191692f93c0… 7:22 AM Apr 10th via web
  5. rare disease language from house ULTRA/FAST Act doesn't make senate, call sen. Harkin & Enzi ask to include in PUDFA: curetheprocess.org/ultra_act 10:41 AM Apr 6th via web
  6. new autobiography by uk harpist & #sanfilippo mom, elinor bennett, in @walesonline: walesonline.co.uk/showbiz-and-li… 4:31 PM Mar 13th via web
  7. great quote from patrick comparing climb to dealing with #sanfilippo in @BocaBeacon: bocabeacon.com/news/featured-… 9:16 AM Feb 20th via web
  8. patrick & bruce's climb covered by @orlandosentinel: orlandosentinel.com/news/local/ora… 8:28 AM Jan 23rd via web
  9. patrick reaches summit of kilimanjaro w/#sanfilippo "courage" flag @ 4:40am est 1-15-12. will post pic when he completes desent. congrats! 8:26 AM Jan 15th via web
  10. #genetherapy success in uk reported by @nejm is positive news for pending sanfilippo gene therapy: nejm.org/doi/full/10.10… 11:25 AM Dec 12th, 2011 via web
  11. ben's dream completes $150k funding of $250k grant in conjunction with cmrf to dr. h.fu @nationwidekids for sanfilippo toxocology study. 11:40 AM Dec 6th, 2011 via web
  12. ben's dream use of qr-code hits tech blog via @QReateAndTrack: qreateandtrack.com/2011/11/22/qr-… 8:13 AM Nov 23rd, 2011 via web
  13. #chasegiving results are in - ben's dream missed grant level. thanks all. 8:03 AM Nov 23rd, 2011 via web
  14. #chasegiving thanks to all for voting! awaiting chase results. 11:57 AM Nov 22nd, 2011 via web
  15. #chasegiving vote ends noon est today. ben's dream currently out of grant level, please vote to secure $25k: apps.facebook.com/chasecommunity… 4:55 AM Nov 22nd, 2011 via web
  16. #chasegiving vote ends tomorrow noon est, ben's dream is at risk of missing a grant level - final push, vote & share!: apps.facebook.com/chasecommunity… 5:03 PM Nov 21st, 2011 via web
  17. #chasegiving vote ends tomorrow noon est, ben's dream is at risk of missing a grant level - final push, vote & share!: apps.facebook.com/chasecommunity… 3:23 PM Nov 21st, 2011 via web
  18. #chasegiving only 2 days of voting left! ben's dream is 93 votes from missing a grant level - spread the word to vote: apps.facebook.com/chasecommunity… 5:01 AM Nov 21st, 2011 via web
  • Name Ben's Dream
  • Location Massachusetts
  • Web http://www.bensdr...
  • Bio Ben's Dream is a 501(c)(3) non-profit. Our mission is to promote awareness and raise funds to support research aimed at finding a cure for Sanfilippo Syndrome.
16 Following 12 Followers 0 Listed
Rani Elwy Callanan & Klein NEJM Children's Hospital NIH ORDR NORD Roy Zeighami SF4K Adam Klein Youk's Kids George Knight Mieka Pauley National MPS Society Barbara Kessler ErikWemple Ari Hest