DISCLAIMER
The information and materials accessed through or made available for use on any of our Sites, including, any information about diseases, conditions, treatments, or medicines, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment, and your participation on our Sites does not create a healthcare professional-patient relationship. You should consult a doctor or other qualified health care professional regarding any questions you have about your health or before making any decisions related to your health or wellness. Call your doctor or 911 immediately if you think you may have a medical emergency.message sent
email sent successfully
rareLife solutions 606 Post Road East #397 Westport, CT 06880 |
||
You are receiving this because you have an account on www.oneMPSvoice.com | ||
To unsubscribe from these emails, click here |
Trusted Resources: Community Center
I Want to Live in the Moment While There’s Still Time
My daughter Abby has Sanfilippo syndrome, which is a terminal, genetic disorder. She will likely leave this earth before me.
That thought alone is quite a lot to absorb and process. It forces me to think long term. How many more years will she be here with me? What will our lives look like in several years after the disease has progressed? How old will she be when she passes?

Related Content
-
Community CenterCure Mucolipidosis – InstagramCure Mucolipidosis is a non-profit organ...
-
news & meetingsFall Family FundraisingLast year, we initiated our annual Fall ...
-
Community CenterSanfilippo Children’s Foundation – LinkedInSanfilippo Children's Foundation is a no...
-
educationElectroclinical Features of Epilepsy in Mucopolysaccharidosis III: Outcome Description in a Cohort of 15 Italian Pat...Mucopolysaccharidosis III (Sanfilippo sy...
-
educationGlobal Epidemiology of Mucopolysaccharidosis Type III (Sanfilippo Syndrome): An Updated Systematic Review and Meta-A...Mucopolysaccharidosis III, an autosomal ...
-
news & meetingsA 22 Year Old Rotherham Man, no Longer Walk Up His StairsA Yorkshire community has launched a fun...
-
educationLong-Term Safety and Clinical Outcomes of Intrathecal Heparan-N-Sulfatase in Patients With Sanfilippo Syndrome Type ...Currently, there is no effective therapy...
send a message
Reset password
password changed successfully!

please log in with your email address and new password.
your activation key expired
this confirmation key has expired. please try to log in again or resend confirmation email.
confirmation email sent

a confirmation email has been sent to your inbox. click the link in the email to activate your account.
can't find the email? be sure to check your spam folder.
password reset email sent

an email has been sent to you with a link to reset your password.
can't find the email? be sure to check your spam folder.

If you are a doctor or other qualified health care professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services, or treatments therein are right for you or others.
your account is now activated!

Log in
This feature is only available to members.
you haven't confirmed your email address yet. resend confirmation email