ASPS day of learning and research September 23, 2016

[cachabamba10]

Are any of you guys in this forum aware of the conference/day of learning that will be held in Miami,FL on September 23rd for ASPS and on the 24rd for Sarcoma in general. There is more info I believe in Facebook on the Alveolar soft part sarcoma group link. I wonder if we have a link somewhere here in the website? I just wanted to know who was going and what were you guys thinking about this. The speakers seem pretty good, I really would like to hear from Ian Judson.

Let me know who is going to expect to see you.

Mario Arevalo

[Olga]

Hi Mario, it is a good information, I didn't know about this meeting. I will move your post to the meetings and conferences topic. I think it was just recently posted with the dates and speakers list:
https://breelynwilkymd.com/2016/08/17/a ... -learning/

Friday, September 23, 2016 – SCCC / Manny Alvarez Foundation Alveolar Soft Part Sarcoma Day of Learning / Research Workshop.
Life Science & Technology Park, 1951 NW 7th Avenue, 1st Floor, Miami, FL 33136

I am sure that our president Josef Landesman is going to make sure we have all the proceedings of the meeting on the first page for the people unable to attend in person.

[Bonni Hess]

Dear Mario and Olga,
Thank you for sharing this very important information with the Board. Brittany and I are considering attending the workshop and I am wondering if any other ASPS patients/patient family members on this Board will be attending? It would be wonderful to be able to meet some other Board members who we share this very difficult battle with, and to share some special hugs and time together with each other. I think that the workshop will provide an invaluable opportunity to obtain up to date ASPS treatment information and to network with ASPS oncologists, researchers, and patients/patient family members. I Hope that as many CureASPS Board members as possible will be able to attend.
With deepest gratitude for your important information sharing, and with caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear Mario,
Brittany and I are now scheduled to fly to Miami and are registered to attend this exciting first ever ASPS Workshop. We are really looking forward to personally meeting you after all the years of only being able to communicate in writing on the Board, as well as having the rare opportunity to listen to and meet the many prestigious ASPS speakers, and to have discussions and network with other ASPS patient advocates, patients, and patient's family members.
Travel safe to Miami and we will see you at the Workshop on the 23rd .
With safe and good travel best wishes, special caring thoughts, and continued Hope,
Bonni

[jcs2007]

Bonni, I am so excited that you are traveling to Miami for the ASPS forum and I'm sad we will not be there. We had planned to go but are unable to go now. I am looking forward to hearing all about this special meeting. Ps. We have had wonderful care in Miami! Safe travels and praying for all those who battle ASPS.

[Bonni Hess]

Dear ASPS Community Friends,
Brittany and I were very honored to be able to attend the excellent and extremely worthwhile ASPS and Sarcoma Days of Learning Workshops in Miami on September 23rd and 24th. We really enjoyed both workshops which were very informative, but we were of course most excited about and interested in the wealth of information that was provided specifically about ASPS at the ASPS Workshop on September 23rd by an international group of incredibly knowledgeable, experienced, esteemed, and dedicated Sarcoma oncologists, researchers, an orthopedic oncology surgeon, and a bone and soft tissue pathologist as well as ASPS patient/family representatives. The topics which were presented and discussed included an Overview of ASPS: Past, Present, and Future (Dr. Breelyn Wilky, Sylvester Comprehensive Cancer Center), Pathology and Molecular Aberrations in ASPS (Dr. Andrew Rosenberg, Sylvester Comprehensive Cancer Center), The Role of Surgery in ASPS (Dr. Fran Hornicek, Massachusetts General Hospital/Harvard Medical School), Patient Perspectives on Finding Treatments for ASPS (Nathan Traller, 4Nathalie Foundation), Treatment of ASPS: The European Perspective (Dr./Professor Ian Judson, The Institute of Cancer Research/The Royal Marsden), AL3818 (Anlotinib) Hydrochloride in the Treatment of ASPS (G. Paul Chen, CEO Advenchen Pharmaceuticals), Role of Immune Checkpoint Inhibitors in ASPS (Dr. Neeta Somaiah, MD Anderson Cancer Center), Vaccine Therapy for ASPS Patients (Dr. John Goldberg, Agenus Inc.), Preclinical Drug Screens and Target Validation (Dr. Charles Keller, Children's Cancer Therapy Development Institute), Mouse Models of ASPS and Targeting Metabolism (Dr. Kevin B. Jones, Huntsman Cancer Institute), Targeting CMET in ASPS (Dr. Andrew Wagner, Dana Farber Cancer Institute), and Novel Targets in ASPS Drug Development, (Our very own CureASPS Founder and President, Yosef Landesman, Ph.D., Karyopharm Therapeutics Inc.) We also had the joy of personally meeting a few other ASPS patients/family members including Sharmaine, Bridget, and Kristi who had previously posted on the Discussion Board. We are deeply grateful to the Manny Alvarez Foundation and the Sylvester Comprehensive Cancer Center at the University of Miami for their very generous sponsorship and hosting of this first ever ASPS Workshop which brought together our International ASPS Community of doctors, researchers, and patients/families for an invaluable day of information sharing and discussion. Special and immense gratitude is owed to Christie Martell, devoted sister of ASPS patient Manny Alvarez who together with her family graciously proceeded with the organization and sponsorship of this wonderful event despite Manny's devastating loss to this insidious disease on August 10th, 2016 less than a month and a half before the planned Workshop, and also to the incredible Dr. Breelyn Wilky who is dedicated to ASPS research, treatment development, and patient care and who was instrumental in helping to plan and coordinate this very exciting and energizing event. Yosef Landesman, his wonderful wife Esther, and I were all so inspired and energized by the ASPS Workshop, that we are hoping to work together to continue the momentum created by the Workshop, and to possibly plan and organize another ASPS Day of Learning and Sharing hopefully sometime within the next two years, and possibly in Boston. In the meantime, Brittany and I came away from the Workshop with a much greater understanding about ASPS, profound admiration for the amazing doctors and researchers who are so motivated and dedicated to studying ASPS and finding effective treatments for it, greatly encouraged that progress IS being made in ASPS research and treatments, and with strengthened Hope that someday there WILL be an effective treatment and cure for this extremely rare and challenging disease that heartbreakingly invaded our Lives over 15 years ago, and which has tragically taken too many precious young Lives during our difficult 15 year journey with it.
With deepest gratitude for the privileged opportunity to attend the 2 wonderful ASPS and Sarcoma Workshops, and with special caring thoughts, healing wishes, and continued Hope for everyone in our ASPS patient/family Community,
Bonni

[D.ap]

Bonni
Thank you so much for the feed back
It sounds like the conference was a great success
I look forward to a video when it comes available
I'll post your post on face book
Love
Debbie

[Kristi]

Thank you so much for summing it up for us Bonnie. It was great to meet Brittany and well as Mom. She is a walking miracle seems to be doing very well which gives us all much hope!!! Thank you for all you do with IcureASPS. It was a great workshop and nothing more beautiful to see patients, researchers, oncologists, pathologist, clinicians , parents, caregivers, those with lost loved ones collaborating and working together for the good in all no matter where you practice, work or live. Grateful I had the opportunity to be a part and share with others!! Thank you for taking your time to POST!

[Jorge]

Thank you so much for the summary, Bonnie! You're so enthusiastic and always willing to help people.
Want to thank all these professors, doctors, sponsors and attendees! Thanks for researching this disease and help the patients!

[cachabamba10]

Did anyone videotape the event and if someone did can it be uploaded into youtube? I wasn't able to attend and would like to know how it went please let me know.

Thank you

Mario

[Bonni Hess]

Dear Mario, There was a photographer taking pictures at the ASPS Workshop, but I am unsure if the Workshop was videotaped or not. You can probably contact Dr. Breelyn Wilky who organized the event to find out if a video copy is available. Please let this Board know if you receive any information about how to obtain a video copy if it is available. Thank you. With special caring thoughts, healing wishes, and continued Hope, Bonni