Brett Billmeyer
  • Male
  • Saint Paul, MN
  • United States
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Brett Billmeyer's Friends

  • Lisa G
  • Donna Lee
  • Lynda Wilson
  • Dena Funderburk
  • Holly Hume
  • Melissa Aguilar
  • Imran Babar
  • jessica nelson
  • Brett B.
  • Dina Kalaty
  • Laurie Bailey
  • Stephanie Dykes
  • Mary Melendez Kirby
  • Julia N

Brett Billmeyer's Discussions

Bracelets and Brochures

Started this discussion. Last reply by Daniel Massello Apr 6, 2014. 1 Reply

We still have plenty of bracelets to give away. We also have brochures now if anyone is interested in receiving one. You can message me your address and I will be happy to mail it to you. Let's…Continue

Question from Renata

Started this discussion. Last reply by Brett Billmeyer Oct 8, 2012. 1 Reply

I was able to translate Renata's question. We are working on getting a translation on the site, but for now it is just me doing my best! Her comment was:"My boys are likely to qualify for clinical…Continue

New Survey for Persian Jewish Community Posted

Started May 31, 2012 0 Replies

If you are a member of the Persian Jewish Community, please please take a moment to fill out this important survey and we would love if you could share it with other members in the community. You can…Continue

Our First Giveaway!

Started this discussion. Last reply by Brett Billmeyer Oct 21, 2012. 8 Replies

We have LAL Solace bracelets! I will be happy to mail free bracelets to the 1st 10 people who respond! Just provide your name and address and how you are affected by LAL Deficiency. Continue

 

Brett Billmeyer's Page

Profile Information

What brings you to LAL Solace?
All
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Myself

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Brett Billmeyer's Blog

Rare Disease Day...Getting the Word Out!

Posted on February 23, 2012 at 12:41pm 0 Comments

Next week, on February 29 it will be Rare Disease Day! A day to recognize those of us who have been touched by a rare disease. And with LAL Deficiency, we certainly quality for a rare disease! Our Board will be traveling to Washington D.C. for Rare Disease Day events. There will be a day for patient groups at the National Institute of Health and a day at the FDA to discuss what has been going on in terms of research and treatments for rare diseases. I just wanted to share some facts about…

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WORLD Symposium 2012

Posted on February 23, 2012 at 12:00pm 0 Comments

Two weeks ago, Stephanie Dykes, Dakota's mom and our Board's secretary, and I travelled to San Diego for the WORLD Symposium. This was a conference dedicated to Lysosomal Diseases, such as Wolman's Disease and CESD. It was a gathering of medical professionals, scientists and patient advocacy organizations, such as LAL Solace. Stephanie and I were able to meet so many wonderful people who are working to raise awareness and treat these diseases. We listened to speakers discussing the LAL…

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Study Opportunity

Posted on June 20, 2011 at 3:31pm 0 Comments

Synageva is currently studying the natural history of early onset (Wolman Disease) LAL Deficiency.  The information from this study is very important to the understanding of Wolman disease since it is so rare and there is no information summarized from large groups of patients available in the literature.  If you are interested in having your child’s data included in this study, please contact one of the active clinical study sites or the sponsor representative listed on … Continue

Comment Wall (14 comments)

At 3:56pm on April 12, 2011, Karen deJong said…

Hi,
Its so great to talk to someone who knows what I am talking about!
Have you run into other people with Wolmans or CESD?  Is Wolman's more common than CESD?  I have heard that there have only been 40 recorded cases of CESD, but they also talk about 1/million cases. If so, where is everybody? 
Do you have other healthy children?  I have 2.  One is 4 and one is 5.  But I would really like them tested yet as CESD can present itself until adulthood (?) 
Do you know if you have one child with either Wolmans or CESD, if you have any future children- would they be at risk for the same level of LAL defficency?  Or could it be higher or lower- say if you had a child with Wolman's -could you have another child with later onset CESD -or if you have an earlier onset CESD, would I need to worry about my other 2 kids having a later onset of the disease.
Have you heard anything about prognosis?  All I have heard is that it depends- not too helpful. 
Amy was only diagnosed a couple of weeks ago, so it is still all new for us.  It feels like a huge learning curve.  Its been a challenge to put her on a low fat/ cholesterol diet and keep the rest of my family happy too without making her all seperate meals.  Oh well, the low fat should be good for all of us right :)
Sorry for posting so many questions...

At 3:57pm on April 12, 2011, Karen deJong said…
sorry- 50 recorded cases (typo)
At 7:53pm on April 14, 2011, Heather Leyhe said…
Thank you for welcoming me to this site. I am Stephanie's cousin. Stephanie sent me the link to join this site. Take care!
At 5:26pm on June 5, 2011, Margi moakes said…
Thank you for your message. It is nice to have contact with others that know what we have been through. Lili had a bone marrow transplant but she was just too poorly to get through the treatment. She lost her battle 5days after her transplant, complications of the treatment. She developed VOD . I really hope the new trials work, dr Quinn is working with the doctor that treated Lili in the UK. I met with Dr Quinn last year, it was him who passed the details of your site to me. I have a healthy little boy Jenson now. I went through PGD IVF treatment to have him.
At 4:43pm on July 13, 2011, Brett B. said…
Thanks Mary.  I have heard wonderful things about this website.  I will be more than happy to share my story about living with CESD.
At 2:19pm on January 24, 2012, Melissa Aguilar said…

Hi Mary, I just had to share.  I went to visit my 45 year old cousin and he pulls me to the side and said: "Listen, I wrote to a doctor about your disease and I they wrote me back".  I was so touched I started crying of course.  It meant a lot that he went out of his way to do this for me.  He then told me don't worry about it, we just have to keep going.  So then he tells me I have been doing research on this and I start telling him about the support group I joined called LAL Solace and he said oh with Mary Pruitt and I said yes!  He saw your video on FB and that helped educate him and become aware of this disease and I just want to thank you for helping us out and giving us a place to turn to.  It is hard not having anyone to talk to about this but when I come on this page and see all the information and everyone sharing their stories, I feel so at peace, loved and supported.  Blessings to you and your family Mary for what you are doing for the LAL Community.

- Melissa Aguilar

At 5:42pm on January 24, 2012, Brett Billmeyer said…

I am so glad that we can help you feel like you are in a supportive place...that's what we are here for! That was really sweet of your cousin to look that up for you:)

At 12:55am on February 27, 2012, Melissa Aguilar said…

Hi Mary, I would love to see a walk happen for our community.  I think it is very important we all get involved. 

At 4:02pm on October 11, 2012, Holly Hume said…
Hi Mary i tried to send a message but for some reason it wouldnt send when i pressed send
At 4:04pm on October 11, 2012, Holly Hume said…
Hi. Well i will start form the beginning. My son is Tristan he is 6 years old. In August of 2011 we went to the doc for constipation did some xrays found out his liver was enlarged. They recommend me to go see a GI doc that works for Women and Children's hospital of Buffalo NY. They did tons of blood work and sonograms and then decided on Feb 8 of 2012 to do a liver biopsy. When we went to get the results in March he told us it could be a few different thing's and recommended me to go see the Hospital genetic doctor, also that he had stage 2 scaring on his liver already! The doctor we now see works at Women and childrens hospital his name is Dr. Erbe in the genetic department. We did some more blood work to try to narrow it down. He then decided in July to do a test not sure what it was called. I know it was sent to Massachusetts general hospital Dna diagnostic lab. We had are appointment yesterday Oct 10 and he told us he did have CESD. On the interpretation on the lab results it did say late onset of CESD and early onset of wolman's. The results said on the paper LAL (lipa) <0.02 nM/punch*hr that was his result normal range on that would be 79.9-378.6 nM/punch*hr. His was very low. the doctor then told us we would have to do treatment for this.

I do have questions about this, more specifically about the treatments out there for it? Like side effects and i know there is no cure out there for it but if he does get treatments will he be ok? I do have more but i will write back when i figure them out. I also have two other children they are 2 1/2 and 3 months old. They told me i might have to have them tested to to make sure they dont have it to. Thank you so much i do appreciate all the help and support, it is just so overwhelming at this time i just dont know what to do i just wanna cry but i know i have to be strong for him. Thank you once again

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