PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999

submitted by Lisa Graziano, mom to Cameron (living with PWS)

My husband and I attended our first PWSA | USA conference back in 1999 when it was held in conjunction with the Prader-Willi California Foundation, organized by Frank Moss (of PWCF) and Janalee Heinemann (of PWSA). Our son was just 6 months old and the cutest little thing who generated a lot of attention, especially from the ladies with PWS. One sweet young woman begged me to let her hold my baby, and for reasons I still don’t understand, I let her. Still carrying him, a nearby elevator door opened and she quite suddenly stepped inside. Already stuffed with throngs of conference attendees, I barely made it into the elevator with them! Years later I’d come to know sweet Yvette well and I’d work with her mother, Renee Tarica, at PWCF. Later, another young woman asked me if my baby has PWS, to which I asked if she also has a baby with PWS. She hesitated only slightly before sharing, “No, I have PWS.” I’d later work at PWCF with Melissa’s mother, Fran Moss (wife of the conference’s coordinator Frank) and learn that Melissa was being treated with growth hormone.

Similar to current conferences, there were large general sessions on topics of potential interest to all, and smaller breakout sessions for niche interests. Growth Hormone was not yet approved for PWS, was vitriolically controversial, and was presented in a large general session. Parents lined the isles behind microphone stands to ask their questions about this promising new drug. I lined up behind them, terrified to speak in such a public forum, but needing to know, “How young can a baby be in order to start growth hormone treatment?” The presenter, Phillip Lee, M.D., answered the question within his legal boundaries; he later gave me his card and invited me to make an appointment to see him at UCLA to discuss treatment. We started growth hormone treatment 3 months later.

While we’d certainly already begun much early intervention work, attending this conference truly marked the beginning of our PWS journey. I could not have known it then, but I would meet parents, professionals, physicians, and persons with PWS who would shape and improve the course of our son’s life, shape and improve the course of my life, and stretch me into becoming a bigger and better person than I would ever be without their influence and guidance.

Submit your own PWSA memory below:

Name
First Last
Email*
Name of Loved One with PWS
Age of Loved One with PWS*
State Your Loved One Lives In
Share Your PWSA Memory Here*
File
File
File
File
I agree to PWSA | USA's Media Consent Policy*
I agree to the privacy policy.
By clicking here, I hereby authorize and grant my full permission to Prader-Willi Syndrome Association | USA (PWSA | USA) to collect, use and store any of my personal information, including, without limitation, my likeness, image, voice, and/or statements (“the personal information”) for posting on the PWSA | USA website or social media pages, to use for printed publications or for other purposes that may convey my identity (names may be used unless otherwise specified), diagnosis and other information.

I acknowledge that:

1. I have the authority to grant this authorization and I hereby waive any rights of privacy and other cognizable claims which I may have in connection with the use of the personal information on the PWSA | USA website or social media pages, in printed or other publications, or for other purposes. I understand that this consent is intended to release from liability all personnel of PWSA | USA and is valid unless and until revoked as described below.
2. I understand that the personal information provided to PWSA | USA may reveal sensitive health information about me, including health conditions, diagnosis, and treatment.
3. I understand that any personal information I share with PWSA | USA may be included in various media, including, without limitation, print and digital media, audio and video recordings, photographs, and written statements.
4. I agree that PWSA | USA shall own worldwide copyright and other intellectual property rights in any work product incorporating the personal information. Under this authorization, I assign and transfer to PWSA | USA full worldwide right, title, interest in and ownership of all copyright and other intellectual property rights in such work product without payment of any fees, royalties or other compensation.
5. I understand that I may revoke this authorization at any time by sending an email to PWSA | USA at events@pwsausa.org which identifies the information covered by the revocation. Upon receipt of this notice, PWSA | USA will endeavor to stop using this information within a reasonable time after receipt of such notice.
6. I acknowledge that I am signing this authorization voluntarily and that I am not required to sign this authorization as a condition of eligibility to receive any benefits or services from PWSA | USA. I understand that I may refuse to sign this form.
7. If I have any questions about my privacy rights under this authorization, I understand I may contact PWSA | USA by sending an email to: events@pwsausa.org . The terms of this authorization are not linked to any other agreement, nor to the term of any other agreement, and the terms of this authorization will survive until a request for revocation is submitted as described above.