April 8, 2019 at 12:40 pm #46159
Share your feedback here!April 9, 2019 at 8:55 am #46160
First off, it was great meeting everyone and getting to know a little bit about each of you. In hindsight I think it might have been better to spend some more time together as a group. While I admit I had my share of distractions as far as a family from Michigan that wanted to eat every meal with my wife and I. I also reconnected with a friend who I haven’t seen in 25 years and who went to camp with me some 40 years ago. He, regrettably, reminded me that there are only four of us left from a group of a dozen that were close back then. I did mention to those I could and then eventually to Sonji that we should be able to start topics here on the forum and I see that has been enabled. This can be an avenue for us to keep in touch to interact without having set aside times and dates for phone calls.
As I mentioned, I will be in Washington D.C. at the end of the month speaking for the Hemophilia Alliance about the 340B program and will keep everyone updated on that. I did get to meet some of the people from there and I am enthusiastic about the opportunity. I need to do my homework though on the 340B program beforehand but I have a bunch of reading material and the Hemophilia Foundation of Michigan’s annual meeting is just prior so I can review everything with the professionals involved in that program.
I am looking forward to the future working with everyone and trying to make a difference.
KenApril 9, 2019 at 9:04 am #46161
This was my first of any kind of national meeting and it was a bit of a shocker. Lots going on, lots of people to meet, TERRIFIC dinner Saturday. Very glad I went though.
KenApril 10, 2019 at 3:12 pm #46182
I had a great meeting. I especially enjoyed the history of hemophilia exhibit. The medical lecture on different treatments past, present and future was also very informative. I enjoyed meeting the advocacy leadership team and I’m really looking forward to getting my story out to my elected officials.April 16, 2019 at 10:05 pm #46233
i really enjoyed Symposium. lets be honest, San Diego was beautiful!! I really enjoyed meeting all the other members of ALC. I am thoroughly impressed by everyone’s stories and passions. its quit motivating and inspiring. I love hoe HFA makes such a big event seem like family. Running into people I had met at previous events and reconnecting on a deeper level. I also loved the history exhibit. loved hearing how it came about from peoples stories and personal items. Thank you Sonji for all you time and hard work you put into building it. And now its going to the Smithsonian….WOW!
i truly enjoyed the policy preCon. digging deeper helps grow awareness and passion for advocacy. I can home Sunday to advocacy day training for our Advocacy Day on monday. i was pumped. Not to mention we had Kim Isenberg with us. I felt empowered and prepared to share my story. Thank you!
back to Symposium…Final night on the midway was amazing!!!April 24, 2019 at 2:11 pm #46271
I had a really great time at Symposium. San Diego was beautiful, the weather was amazing, and quite frankly, it was great to have a few days off from mommy duties at home! It was really nice to meet the rest of the ALC and begin to get to know each other.
The history exhibit was really the highlight for me. It just made me feel so grateful that my son was born in this decade that medical advances have come so far, and he will not have to suffer as badly as hemophiliacs in the past. It also gave me new inspiration to dig into my own family history and find out more about my uncle’s and great-uncle’s experiences.
I learned a lot from the policy and advocacy sessions. Each session was very informative and I walked away from each with at least one new piece of information.
I also really enjoyed the social events. The friends and family reception at the poolside and the final event on the Midway really gave us a chance to just talk and share stories, connect with new friends and reconnect with old ones. The farewell on the Midway truly felt like a celebration of all of the wonderful people in this community and it was the one time that I wished that my babies were there with me! They would’ve loved those planes and fireworks!!April 28, 2019 at 11:12 am #46306
I really enjoyed my time at the Symposium as well. Thank you Sonji and all at HFA for always bringing together such an amazing group of people. I thought it was really great to meet the others from the ALC as well. I look forward to working with you all in the future. I came home more motivated to advocate after Symposium and I am looking forward to bringing this wealth of information to my chapter too.May 14, 2019 at 4:26 pm #46533
I absolutely loved it! It was great seeing all of my Hemo family from around the country as well as making new friends. I really enjoyed the history of hemophilia exhibit and appreciated the private time in there. Seeing that old Monoclate P box made me a little emotional, but I am thankful for the experience. The 80’s and 90’s were such a tumultuous era. I am glad y’all took the time to document it. Aside from meeting my fellow members of the ALC what meant the most was being able to connect my bestest Blood Brother with the Hemophilia community in Cali. I know he is in good hands and have heard that he has taken time to hangout with his new hemo family. It’s making me tear up just to think about how he has come from being isolated in his hemophilia to meeting and engaging others in the hemophilia community, and even considering them his family. We all need that… Thank you HFA. You truly make this community strongerMay 29, 2019 at 9:57 pm #46679
I had a great time at Symposium! It was so nice to meet all of you! I loved the history exhibit as well. It was amazing to see how far treatments have come for bleeding disorders. It was also pretty gut-wrenching viewing what our community has gone through. My favorite session was seeing what treatments are on the horizon and listening to the panel beforehand. I also loved the session with Dr. Park, he was very informative and kept my attention. I’m looking forward to meeting with you all in June, safe travels!
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