California Families

Information

California Families

This group is for families living in CA.

Location: California
Members: 88
Latest Activity: Feb 12

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.

Discussions

new to duchenne

Started by Christina Roberts. Last reply by Leeandra Arhdeacon May 30, 2012. 5 Replies

Santa Clara CA

Started by Jessica Argueta Tucker. Last reply by Jeff Marr Mar 15, 2012. 2 Replies

Any Palm Springs or vicinity families?

Started by Mark Perrotte. Last reply by Mark Perrotte Mar 1, 2012. 6 Replies

Any families in the Inland Empire? (Southern California)

Started by Leigh Alisen Pernosky. Last reply by Jill lancaster Sep 28, 2011. 8 Replies

Education Talk!

Started by Kelli May. Last reply by Kelli May May 18, 2011. 10 Replies

5th grade outdoor / education 4 day camp

Started by Kim Maddux. Last reply by Bill Cain May 21, 2010. 4 Replies

5th grade outdoor / education 4 day camp

Started by Kim Maddux. Last reply by Kim Maddux May 21, 2010. 2 Replies

Looking for used mobility scooter

Started by Kim Maddux. Last reply by Susan Rathfelder Mar 22, 2010. 1 Reply

Earthquakes

Started by Kim Innabi Mar 4, 2010. 0 Replies

Regional Center

Started by Patty Sherman. Last reply by Kim Innabi Nov 17, 2009. 8 Replies

Pilates for a Cure

Started by MicahsDaddy Sep 10, 2009. 0 Replies

DMD Fundraiser

Started by Amy Martin. Last reply by Amy Martin Apr 23, 2009. 4 Replies

San Diego Area Families

Started by MicahsDaddy Feb 18, 2009. 0 Replies

DC Advocacy, attendance and participation

Started by Julie Garcia. Last reply by Julie Garcia Feb 14, 2009. 1 Reply

Easy to manage California Activities

Started by Rebecca Saulsbury. Last reply by Laurie Barton Feb 7, 2009. 2 Replies

2009 Advocacy Conference

Started by Julie Garcia. Last reply by Julie Garcia Jan 25, 2009. 4 Replies

Comment Wall

Comment

You need to be a member of California Families to add comments!

Comment by MicahsDaddy on June 26, 2008 at 1:53am
you're welcome. i am still learning photoshop...i hope to figure out a way to make the photos more clear. for some reason, they get a little fuzzy once i implement the slide show animation.
Comment by Mary Sahagun on June 25, 2008 at 5:49pm
Nice job on the "California Angels" great idea! The picture is fine, but maybe I'll send you one with him by himself. I'll send it via email. That's a bummer about the Kick for a Cure. I agree... "what a jerk". ;- )
Comment by MicahsDaddy on June 23, 2008 at 2:02pm
Kick for a Cure was cancelled due to a few things.

1. only 32 teams signed up.
2. there is a huge club tournament in san diego the following weekend.
3. and, not to sound bitter, but some chump that we interviewed to be our Tournament Director turned us down and then put his charity tournament on the exact same weekend. there are only 2 charity tournaments in San Diego and he knowingly puts it on the same date? what a jerk. Anyway, his tournament benefits Rady's Childrens Hospital. hope he feels good about himself.
Comment by MicahsDaddy on June 20, 2008 at 7:48pm
Hi Christina, sorry you had to find us, but welcome.

Question for you, what is your son's mutation? I assume it is the same as your brother and uncle's. I wonder if it is a deletion somewhere between exon 45 and 52...or including multiple exons in this region.

Autism, or any other form of ASD's, is pretty common with DMD, especially more common with deletions in the range I just mentioned.

My son was diagnosed with autism when he was 3 1/2, then with DMD the day before his 4th birthday. He has a deletion of exon 45.

Take care,

Christian
Comment by CHRISTINA RODRIGUEZ on June 20, 2008 at 7:12pm
Hi, my name is Christina. My son's name is Bryan, he is now 5 y/o. Bryan's diagnoses for DMD was reconfirmed at the age of 3 on 11/17/05. when I was 20 wks. pregnant I had an amniocentesis done. I received the results for the first time when I was 28 wks. I was very emothional through the rest of my pregnancy. I had two uncles with DMD. My Uncle Peter past at the age of 14 from Pneumonia before I was born. My other Uncle Ruben was 26 y/o when he also past of Pneumonia. I was 15 y/o at the time. I have a 13 y/o brother named Nick. Nick was diagnosed at the age of 3. He was also diagnosed with Autism. My Mother Lupe and I live in Santa Fe Springs in LA county. I am so happy that I found PPMD site. My son and I would love to meet other member in Califorina.
Comment by Kristi Powell on June 15, 2008 at 2:34pm
I cannot thank you enough Julie and other's for your kind words and information of ways to help my family!! You are right about family support. I have none out here, but many friends who help to fill in this gap.This has been the hardest thing for me, being away from my mom and dad. I know that times will get tougher and traveling to CA will be more difficult as time goes on. My parents do their share in coming to TN, but we want to visit CA and the other family members too. I will for sure keep you posted on our plans and would love to meet everyone.
Kristi
Comment by Julie Garcia on June 15, 2008 at 12:30pm
Kristi,

Another thought is to find out about the MDA offices in the areas you are considering. I would call the individual offices and see how close they are to your area. How active they are and what type of services or activites they provide. I would also see if they have a loaner closet. MDA does have an equipment loaner closet that they offer to families. I do not know if all MDA offices offer this resource. I have known families are able to get wheelchairs, standers etc.

I was thinking about you and what other things you might want to consider.

I would then find out what was most important to you and make your choices this way. Most important is to have a supportive family close to you. Families are so important and can help a lot.

Keep us posted with your decision and if you move near one of us perhaps we can come out and welcome you personally.

Take care,

Julie
Comment by Kristi Powell on June 14, 2008 at 6:25pm
Thanks Julie!!
Comment by Julie Garcia on June 14, 2008 at 5:59pm
Kristi,

I can tell you this. There is an MDA clinic in Sacramento that will be participating in PTC 124. Dr. McDonald at UC Davis (MDA clinic) will be speaking at the conference in July. Dr. McDonald is well respected in his field by his peers. Sacramento also has Shriners.

There is an MDA clinic, I believe Forbes Norris in San Franciso. They also are associated with the Sibling Center. The Sibling Center offers counseling for the siblings only whose sister or brother has a terminal diagnosis.

I hope we are able to provide you the information you need. It is important to be close to family. I would also check in with PPMD about resources in the Fresno area.

I wish you only the best in this and we are all here to help in whatever way we can.

Take care,

Julie
Sacramento, CA
Comment by Kristi Powell on June 14, 2008 at 1:25pm
Thanks for the welcome!! I was hoping to do some checking into resources for care, I guess this will be a disappointment.. I was actually going to check out Fresno Children's because if we move closer to my parents home, that would be the closest hospital. I took a look online re: services available through DHS/Disabilities ect, haven't found much. It would be interesting to see which state offers the best care ect...

I wish I could attend the pool party, but we won't be out there. I wish you all a great time and am excited that your boys will get to meet eachother and have that connection!!
Kristi
 

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