MPS6CESS Foundation

04/08/2022

Check out Rare by Design, a non-profit organization created by our friend and fellow MPS VI patient, Kendra Gottsleben. Rare by Design aims to empower individuals with rare diseases through fashion and community.

Rare by Design is a non-profit organization founded by rare disease advocate Kendra Gottsleben, who is living with MPS VI. Kendra started Rare by Design to help empower individuals with rare diseases and their families to live life positively. For the organization’s first event, “The Style Show: A Runway to Empower,” Kendra aims to celebrate true diversity and increase awareness of the need for more inclusive and adaptable clothing options. Read more in Kendra’s first post of her special guest series on our blog: https://bit.ly/3NXSJ10

03/31/2022

Have you signed up to the Napa MPS Race for a Cure?

Our family will be there to enjoy this fun-filled day!

WE'RE BACK IN PERSON for the 2️⃣0️⃣2️⃣2️⃣ MPS Race for a Cure - Napa 5K Run and 1 Mile Walk! 🎉

The race begins at 10:00 AM on Sunday, May 1 at Kennedy Park in Napa, CA. Registration is NOW OPEN at http://ow.ly/ZZT850ItXHj - Same day registration will also begin at 7:30 AM on the day of the race.

We need your help to spread the word! Please tag anyone you think might like to participate (virtual participation is also encouraged!), and share this post with your family and friends. We really CAN'T WAIT to see you all there! 🏃‍♀️

03/23/2022

Today we celebrate MISSISSIPPI!

The Governor of Mississippi has signed into law legislation that will help save the lives of nearly 100 babies born in the state each year! Mississippi is the first state to adopt RUSP alignment legislation this year and the eighth overall, thanks to the efforts of advocates like you!

We thank you for your support and advocacy efforts, and invite you to read the full press release from EveryLife Foundation for Rare Diseases at http://ow.ly/8e8p50Ioke3.

01/31/2022

Today is !

The zebra has become the official symbol of rare diseases in the United States. In honor of our shared mascot we wear striped clothing and accessories to show our support for those impacted by a rare disease. Take a picture of your striped look and share it on social media with the hashtags and and let’s make some noise for our herd!

01/26/2022

As we get closer to , NORD wants to share stories from patients and caregivers impacted by rare disease. Share your story today to be a part of this important celebration and to be considered for a feature on NORD’s blog and social media channels:

NORD invites you to share your story. Join the individuals and families who have contributed their personal accounts of living with rare diseases. Alone we are rare. Together we are strong!

01/26/2022

09/03/2021

09/02/2021

(f)The people of California have benefited from the establishment of a long-term care ombudsperson, a childcare ombudsperson program, and a foster care ombudsperson. It is the intent of the Legislature to provide similar protections for those with rare diseases by establishing a rare disease ombudsp...

07/16/2021

Have questions about genetic testing? Ever wonder if you should be tested? Invitae provides sponsored, no-charge genetic testing for lysosomal storage diseases. Patients and family members are often eligible for free testing if their provider suspects an L*D based on:

• Clinical features
• Suspicion of, or known diagnosis of, a specific lysosomal storage disease
• Family history related to L*Ds
• Lab result suggestive of L*Ds
• Presumptive positive newborn screening

Visit http://ow.ly/Hx4I50FlQwN to learn more, or speak with your doctor today.

07/15/2021

📢 Calling all MPS IV families!!!

The Morquio Community Conference is just ONE MONTH away! Email [email protected] for more information.