PPMD Community

California Families

Information

This group is for families living in CA.

Location: California
Members: 90
Latest Activity: Jul 18, 2021

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Here are our California Angels:

Be sure to register at the DuchenneConnect registry: CLICK HERE

Our Congressional Representatives:
Senator Dianne Feinstein
Senator Barbara Boxer
Representatives From California
Unsure who your Representative is, Click Here, then search by zipcode at the top left of the page.

The California Department of Health Care Services:
The Department of Health Care Services’ (DHCS) mission is to protect and promote the health status of Californians through the financing and delivery of individual health care services. The DHCS finances and administers a number of individual health care service delivery programs, including the California Medical Assistance Program (Medi-Cal).

The California Department of Public Health:
The California Department of Public Health will provide more focused state leadership in public health and health care financing and create a more effective public health infrastructure in California. The department will increase accountability and improve the effectiveness of both public health and health care purchasing activities.

Other CA Resources:
Click here to go to the thread that has the DMD Checklist and other CA information.

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Comment by CHRISTINA RODRIGUEZ on February 6, 2013 at 1:07pm: Hello, my son, Bryan is about to have a spinal fussion surgery in a couple of weeks. I was trying to set up a home schooling involving a teacher to come out to our home a couple times a week. The school is leaning towards emailing me his homework once a week. Can anyone please let me know their experiance with their school after a surgery?

Comment by Luci Nilson on May 30, 2012 at 10:49pm: Our 3 year old, Henry, is newly diagnosed DMD. Looking to connect with other So Cal families for advice, support.

Comment by David Stalling on April 27, 2012 at 1:35am: I recently moved to Berkeley from Missoula, Montana. My son, Cory, has Duchenne. He remains in Montana with his mother, and it's tough to be away from him. But I do what I can from here until I can return home to Montana. In the meantime, it would be nice to have some connections in California and the Bay Area. Thanks.

Comment by Mark Perrotte on February 22, 2012 at 7:07pm: If there is anyone that can give me advise on supplements I would really appreciate it. I am going to start using Creatine and considered melatonin, but I am winging it. Facebook @ mark perrotte

Comment by Mark Perrotte on February 20, 2012 at 7:03pm: Families in Palm Springs or Coachella Valley?

Comment by Rebecca Saulsbury on October 31, 2011 at 12:30am: F.A.C.E.S. of Northern CA would like to invite you to our kick-off event!

Sunday Dec 4th 2011 1 to 4 PM

at Shriner's Hospital

2425 Stockton Blvd, Sacramento

7th Floor Ballroom

RSVP to Rebecca Saulsbury by Nov 20th

rsaulsbury@gmail.com

Lunch provided, carpool available.

Pat Furlong, Ryan Fisher & Sheila Moeshen of PPMD will be in attendance.

Join our Facebook page and get more involved

with your local Duchenne/Becker community! Meet new friends!

F.A.C.E.S. of Northern CA Facebook Page

We are families in Northern California advocating, connecting, educating and supporting the Duchenne Muscular Dystrophy community as an outreach of Parent Project MD. Our goal is to strengthen families and individuals dealing with Duchenne by building ties, providing social opportunities, advocating and educating on a public and legislative level, and supporting Parent Project MD campaigns, until the day comes we can end Duchenne.

Comment by CHRISTINA RODRIGUEZ on May 22, 2011 at 10:17pm: Hello, my name is Christina. I had a question about steroids. My son, Bryan is 8y/o. He is no longer walking and in a manual w/c. He never took steroids when he was walking. The neuralogist just mentioned that it might help him. Are any of your children in w/c's taking steroids? Was it a good experience or bad?

Comment by Kelli May on May 18, 2011 at 8:21am: Hi!

If there are any families from southern CA who would like to attend the conference, but can't, please call me or send me a message. As the Parent Outreach Coordinator for Duchenne San Diego (DSD), my goal is to identify as many DMD families in need of connecting in our area as possible, and then make it happen! We are sponsoring families to attend the conference at no cost, because we believe the conference is THAT valuable. This will be my 7th conference and I have truly benefitted each and every time I come.

If you are not from SoCal, please spread the word to any families you know who are. We are going to have to finalize reservations/arrangements very soon.

My phone number is 619.446.8617.

Thanks!

Kelli

Comment by kimmy watters on March 19, 2011 at 5:10pm: hi ca famlies my name is kimmy watters, i use to live in ca, and i went to standford childern hosptial, i have friends how son have duchenne, i just wanted to say i am here to help in any way i can. kimmy watters

Comment by Marisol on May 15, 2010 at 11:02pm: Hello Cali. Families....glad to join this group!! We live in Northern Cali. I have a 9yr. old Anthony with DMD and a 2yr. old non-DMD. I have not been keeping up with other families much...but I think its about time now....we go to clinic at UC Davis and have been thinking about Cinn---Dr. Wong. Yesterday my son fell at school and broke a bone in his foot....it's not easy :(