April 5, 2013
I've had the privilege of working with Hannah's Hope Fund as a volunteer after learning about Hannah's Hope as a health care professional. I would volunteer and work and give anything I can to help cure Giant Axonal Neuropathy with this organization of primarily volunteers and people who care about children and this rare disease, and by simple, continual actions and giving, by word of mouth and much hard work have earned the respect and admiration of the local, national and international community and of the professional and research community as well. The theme of Margaret Mead's statement, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." rings true with Hannah's Hope. This is a group that tirelessly advocates for children and young adults with this terminal disease - and through their efforts an amazing, unheard of accomplishment has occurred in just 4 short years - the first of its kind human treatment trial for a cure. There IS hope now for these kids and their family's , who up until now, had no hope. There is a future. In my 25 years of nursing as an RN in different capacities in health care, I have never seen such an advancement in such a short time with such limited resources to start. Millions of dollars have been raised in four years by word of mouth and hard work of volunteers - moms, dads, kids, communities. It is truly miraculous and every penny goes directly to funding the cure and the research specific to G.A.N. I have also had the privilege of meeting beautiful Hannah - her smile, her hope, her encouragement and spirit are life changing for everyone who's met her. The courage and strength of Hannah's mom and dad, Matt and Lori, and their two other daughters, to make this happen for any and all other children and families affected by this rare disease, gives me the strength, hope and determination to keep fighting for a cure as well. I deeply and earnestly respect and and humbled to have any part of helping, donating and being a part of such a great organization and such a great group of people.
Would you volunteer for this group again?
For the time you spent, how much of an impact did you feel your work or activity had?
Did the organization use your time wisely?
Would you recommend this group to a friend?
When was your last experience with this nonprofit?