Hi - We are attending a Philadelphia Flyer's fundraiser tomorrow evening for CF. It is a dinner and auction type event. I have been asked to speak on behalf of Jason - 8 yrs old - and our family. The audience will be past and present Flyers and their administration as well as families and fans. Any suggestions on what you think would be good to include. A 17 year old young man with cf will also be speaking. When I asked Jason what his thoughts are about cf - I got a 8 very typical reply. "I hate it. I have to take all these medicines every day!" In the past he has had more to say - not liking how he feels, having to go to the Dr's, getting needles and tests - just it always being there and not being able to take a day off." Let me know your thoughts. Thanks! Jo Ann - Mom to Jason - 8 with cf and Tom - 11 (carrier)
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5 minute speech at fundraiser
- Thread starter JoAnn
- Start date
Hi - We are attending a Philadelphia Flyer's fundraiser tomorrow evening for CF. It is a dinner and auction type event. I have been asked to speak on behalf of Jason - 8 yrs old - and our family. The audience will be past and present Flyers and their administration as well as families and fans. Any suggestions on what you think would be good to include. A 17 year old young man with cf will also be speaking. When I asked Jason what his thoughts are about cf - I got a 8 very typical reply. "I hate it. I have to take all these medicines every day!" In the past he has had more to say - not liking how he feels, having to go to the Dr's, getting needles and tests - just it always being there and not being able to take a day off." Let me know your thoughts. Thanks! Jo Ann - Mom to Jason - 8 with cf and Tom - 11 (carrier)
Hi - We are attending a Philadelphia Flyer's fundraiser tomorrow evening for CF. It is a dinner and auction type event. I have been asked to speak on behalf of Jason - 8 yrs old - and our family. The audience will be past and present Flyers and their administration as well as families and fans. Any suggestions on what you think would be good to include. A 17 year old young man with cf will also be speaking. When I asked Jason what his thoughts are about cf - I got a 8 very typical reply. "I hate it. I have to take all these medicines every day!" In the past he has had more to say - not liking how he feels, having to go to the Dr's, getting needles and tests - just it always being there and not being able to take a day off." Let me know your thoughts. Thanks! Jo Ann - Mom to Jason - 8 with cf and Tom - 11 (carrier)
S
sdelorenzo
Guest
Hi! I spoke last month for a cf fundraiser here in Houston. E-mail me at sdelorenzo@sbcglobal.net and I will pass on some of what I said.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Hi! I spoke last month for a cf fundraiser here in Houston. E-mail me at sdelorenzo@sbcglobal.net and I will pass on some of what I said.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Hi! I spoke last month for a cf fundraiser here in Houston. E-mail me at sdelorenzo@sbcglobal.net and I will pass on some of what I said.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
jonandlindsay
New member
I've spoken at a couple of events, and basically I try to give others a picture of what life is like for us as a family dealing with CF and what it is like for Ella (my daughter) to have CF. I then focus on how far the foundation has come in the last 50 years, the incredible advances and things still on the horizon. I focus on the incredible need for research dollars and the hope that, we as a family, can never lose hold of. I ask for their continued support and involvement. If you'd like to email me (jonandlindsay@earthlink.net) I can actually email you my whole speech. Just let me know. I'd love to help you in any way. And please, let us know how it goes. Good luck!
~ Lindsay
Mom to Ella, 3 yrs. old with CF
~ Lindsay
Mom to Ella, 3 yrs. old with CF
jonandlindsay
New member
I've spoken at a couple of events, and basically I try to give others a picture of what life is like for us as a family dealing with CF and what it is like for Ella (my daughter) to have CF. I then focus on how far the foundation has come in the last 50 years, the incredible advances and things still on the horizon. I focus on the incredible need for research dollars and the hope that, we as a family, can never lose hold of. I ask for their continued support and involvement. If you'd like to email me (jonandlindsay@earthlink.net) I can actually email you my whole speech. Just let me know. I'd love to help you in any way. And please, let us know how it goes. Good luck!
~ Lindsay
Mom to Ella, 3 yrs. old with CF
~ Lindsay
Mom to Ella, 3 yrs. old with CF
jonandlindsay
New member
I've spoken at a couple of events, and basically I try to give others a picture of what life is like for us as a family dealing with CF and what it is like for Ella (my daughter) to have CF. I then focus on how far the foundation has come in the last 50 years, the incredible advances and things still on the horizon. I focus on the incredible need for research dollars and the hope that, we as a family, can never lose hold of. I ask for their continued support and involvement. If you'd like to email me (jonandlindsay@earthlink.net) I can actually email you my whole speech. Just let me know. I'd love to help you in any way. And please, let us know how it goes. Good luck!
~ Lindsay
Mom to Ella, 3 yrs. old with CF
~ Lindsay
Mom to Ella, 3 yrs. old with CF
Sharon and Lindsay - Thanks so very much for all of the ideas and input. I do think my challenge is wording it all in a way that I am able to say what I want and what will help those attending understand why we need them to help - while keeping it not too scary for Jason. Thanks again. I'll email you both to let you know how it goes.
Sharon and Lindsay - Thanks so very much for all of the ideas and input. I do think my challenge is wording it all in a way that I am able to say what I want and what will help those attending understand why we need them to help - while keeping it not too scary for Jason. Thanks again. I'll email you both to let you know how it goes.
Sharon and Lindsay - Thanks so very much for all of the ideas and input. I do think my challenge is wording it all in a way that I am able to say what I want and what will help those attending understand why we need them to help - while keeping it not too scary for Jason. Thanks again. I'll email you both to let you know how it goes.