Help Aidan Get Well (Fight Hypophophatasia)

07/24/2018

My mom has a birthday fundraiser going on for Help Aidan Get Well. We are headed to St. Louis. Please donate to her fundraiser if you can. No donation is to small. We would love to give a big check to Dr. Whyte while we are at the hospital. Remember it helps all of my HPP friends. Please share the fundraiser with everyone you know. Let's get the word out. Let's pay it forward please. Her birthday is almost here. Thank you!

07/24/2018

Hi Friends,
It is that time again. I will be heading to St. Louis. I was wondering, does anyone have any advice that they can share. This will be my first time at the new place. We are going a day early so any suggestions on where to stay for a night? Are you still allowed pass outs and if so where is a good place to go? Also, what did you use for transportation. Better yet, even though I am on a special diet while at the hospital, any suggestions on my free day before. Are any hotels offering HPP discounts? Thanks. I will keep you updated on my journey.

06/13/2018

Hypophosphatasia (HPP) is a genetic condition that causes abnormal development of the bones and teeth. The severity of HPP can vary widely, from fetal death to fractures that don't begin until adulthood. Signs and symptoms may include poor feeding and respiratory problems in infancy; short stature; weak and soft bones; short limbs; other skeletal abnormalities; and hypercalcemia. Complications can be life-threatening. The mildest form of the condition, called odontohypophosphatasia, only affects the teeth.[1] HPP is caused by mutations in the ALPL gene. Perinatal (onset before birth) and infantile HPP are inherited in an autosomal recessive manner. The milder forms, especially adult forms and odontohypophosphatasia, may be inherited in an autosomal recessive or autosomal dominant manner.[2] While treatment has always been symptomatic and supportive, recently an enzyme replacement therapy (ERT) called asfotase alfa has been show to improve bone manifestations people with childhood onset HPP and has been approved by the FDA. (Information taken from https://rarediseases.info.nih.gov/diseases/6734/hypophosphatasia.

06/07/2018

If you received an invite for a like for Aidan's page and you are not sure who he is. He is Laura's son and he lives in PA. Many of you may not have known he has his own page and his own foundation (non-profit) Jeanette and Sheila are his aunts. Please feel free to share our page with anyone. We are trying to bring more awareness to Hypophosphatasia. Aidan has been our ambassador and representative since 2004 and does a fantastic job. He attends a lot of our fundraisers and he also speaks at them. Not only can he do a short speech (he gets nervous) but he will personally speak to those he meets and he does answer questions when asked. Thank you for taking the time and interest in our Hypophosphatasia friends and our cause. (Darlene-Mom Mom) Aidan is currently still in school.

06/07/2018

New treatment shows promise for kids with life-threatening bone disorder

Doctors at Washington University School of Medicine in St. Louis, working with Shriners Hospital for Children and other institutions, have identified a promising new treatment for a rare and sometimes life-threatening bone disorder that can affect infants and young children. Known as hypophosphatasia, the condition upsets bone metabolism, blocking important minerals such as calcium from depositing in the skeleton.

Read more at

Medicine & Health New treatment shows promise for kids with life-threatening bone disorder Doctors at Washington University School of Medicine in St. Louis, working with Shriners Hospital for Children and other institutions, have identified a promising new treatment for a rare and sometimes life-thr...

06/01/2017

Help Aidan Get Well is hosting a fundraiser at Texas Roadhouse in Millville on June 19th, between 4:00 P.M. and 10:00 P.M.. Come out and join us for a night of fun and learn about Hypophosphatasia. We will be including a bake sale and a chance to win some awesome prizes. Hope to see you there. Please bring a copy of the flyer with you to show to your server, so that we will get credit. You can always just show a picture of the flyer from your phone. Thank you and hope to see you there.

05/26/2017

Good morning friends. We at Help Aidan Get Well would like to grow our doctor list. We are looking for places where our friends with Hypophosphatasia can go to get help. As we all know, not every doctor can treat a HPP friend. We are working to change that. We are also working to help the doctors than can treat our friends get the equipment that they need to make care more positive. If you are a HPP friend, or someone in the medical industry or medical field that knows of someone that can treat Hypophosphatasia, could you please share their name, address, and phone if you have it. If you go to a hospital for care, could you please let us know where you are going. It doesn't matter where you live. We have HPP friends all over that are still looking for places to receive help. Let's pay it forward and help them out by sharing. I will add the information to our doctor's list on our website for everyone to take advantage of. Please include dentist as well, since this is also a big part of HPP. Let's grow our HPP community together. Thank you and I look forward to hearing from you.

05/17/2017

Hypophosphatasia (HPP) is a rare genetic disorder characterized by the abnormal development of bones and teeth. These abnormalities occur due to defective mineralization, the process by which bones and teeth take up minerals such as calcium and phosphorus. These minerals are required for proper hardness and strength. Defective mineralization results in bones that are soft and prone to fracture and deformity. Defective mineralization of teeth can lead to premature tooth loss. The specific symptoms can vary greatly from one person to another, sometimes even among members of the same family.
This information is a follow up to yesterday's post and was taken from the same website. Credit for this information goes to NORD and you can find their link in the article below.

05/16/2017

What are the subdivisions of Hypophosphatasia?
•hypophosphatasia, adult
•hypophosphatasia, childhood
•hypophosphatasia, infantile
•hypophosphatasia, perinatal
•hypophosphatasia, prenatal benign
•odontohypophosphatasia
•pseudohypophosphatasia

This information is listed on ahttps://rarediseases.org/rare-diseases/hypophosphatasia/nd is provided by NORD with assistance by Dr, Michael Whyte.

NORD gratefully acknowledges Michael P. Whyte, MD, Medical-Scientific Director, Center for Metabolic Bone Disease and Molecular Research, Shriners Hospital for Children; Professor of Medicine, Pediatrics, and Genetics, Division of Bone and Mineral Diseases, Washington University School of Medicine,…

09/19/2015

There are six clinical forms of Hypophosphatasia that are currently recognized: perinatal (lethal), infantile, childhood, adult, odontohypophosphatasia and a rare benign prenatal form characterized by in utero detection but much better prognosis than other prenatal forms. (posted on behalf of Aidan)

09/16/2015

Hypophosphatasia is a rare and sometimes fatal inherited metabolic bone disease. In infants it can lead to death. In children and adults HPP has life changing abilities, causing constant pain and frequent no trauma fractures, (stress fractures).

09/15/2015

Help Aidan Get Well is partnering once again with Yankee Candles. We have partnered with Yankee for several years now. This year we are featuring an on-line sale so that all of our friends can take advantage of our fundraiser. Please follow the link below to place your order for things we all use and love and Help our Hypophosphatasia friends get well. It is never to early to shop for decorations, teacher's gifts and holiday gifts. Thank you and please support us in our quest for supporting HPP.

Click here to help HELP AIDAN GET WELL INC.