A few minutes after the live interview on Mornings@ANC aired someone called our house wanting to get in touch with us regarding Pompe. It was Valerie Jones. I wasn’t home but my mom was and they spoke about it for a long time.
My mom got her email address but apparently she wrote it down incorrectly. Thus her thank you email to Valerie bounced back. Now we don’t have a way of contacting Valerie and I would really like to get in touch with her. She’s a physical therapist and is working with other patients suffering from Pompe.
Valerie, if by any chance you’re reading this or anyone who knows you is reading this, please do leave me a message her as how I can contact you. Alternatively you can give us a call again and this time I’ll make sure to get your contact details right. I’d really love to get in touch with you.
I just got done with treating a patient and had a quick lunch break and i decided to check my email thinking that your mom has already emailed me but found nothing so i checked out your blog and found out what happened. anyway i would like to hear from you and would love to share the intervention that i do with my patients with Pompe. i had the opportunity to work with a couple of them and had good results with each session. i will try to call you again when i get a chance and i actually started collecting the info for you. hope to hear from you soon! P.S. you might have heard about No pain, no gain but for us it is Conserve to preserve!
Hi Juan,
Sorry for not sending this earlier BUT congratulations on PSOD!!!
I’ve been traveling last week and was in Turkey for the Incternational Congress of Neuromuscular Diseases…Maryze was there and did a wonderful job at the WANDA session (World Association of Neuromuscular Disease Assocations). She is a great ambasador and is really comfortable with speaking to large crowds…she showed a collage of pictures and you were in one!
I’m also looking at buying an Apple computer for FUN. Your thoughts on the iMAC vs. the MAC mini?
Anyway, I trust you are well and will talk to you again.
Yours truly,
Mark
hi! i saw you on tv and i told my self, why do these people need to get diseases? but i realized the more problems or trials in life, the more God trusts you. and i believe you can go through that disease because God always gives problems that you can take. so I advice that always pray to God, never lose hope beacause there are people who are there for you and who loves you
hey! man kumosta ka na?its Doods from LA again,jaz droppin a few min in ur web while i was off-work i haven’t asked my aunt and uncle about ur case but eventually i have to, his research underwent a lot of testings here in the states it started longtime ago in the Phils published in different areas of medical parameters so Filipinos are of the same intuition skeptism came on that part anyways he brought it up to the westside am not sure yet bro if one of ur case has to do with it since it goes with metabolic and biologic processes that leads to immune difficiency, i let u know pare when i see them and explain bout ur case.. see u later man.. ingats! DOODS_LA
one evening i was sitting w/ my wife and son watching the filipino channel and tv patrol briefly featured your story.i told my wife i know this guy.i don’t know if you still remember, 10 years ago i saw you at home for physical therapy before i went to the u.s.i remember your brother, i think his name is stevie.he always plays floor hockey and is prety good w/ the drums.of course, your awesome parents.i remember when i left for the u.s. your mom gave me a thick jacket.let her know that i really appreciate it a lot and definitely helped me during the cold winter months here in chicago.i also remember being invited to the dinner table w/ your parents.i still remember what was on the back of my mind,perfect family. let me know if i can be of any help to your cause.for now i will purchase a couple of stuff from your online store.you look a lot different the last time i saw you.mukhang mama ka na.tell your mom and your dad i said hello.
gud morining po… nkita ko po yung valita sa tv about the pompe deases.. at kong pano ka po dun nakikipag laban.. nakaka antig po ang kwento ng iyung buhay,,
sna po ay tularan ng mga kabataan ang isang katulad mo… kahit na may sakit ka di yun ang dahilan para ebaliwala ang buhay.. i hope god give you another life..
..hhhmmm. yun lng po sige uwi na ako..
tnx ang god bless you..
;>…
shulien