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May 15, 2009

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May 15, 2009

We have been very blessed to be a part of the DS Network "family" for almost 3 years now. My husband & I joined the fantastic online support forum before my 2 1/2 yr old was even born. My son was diagnosed with having Down Syndrome in my 27th week of pregnancy and right away I found a wonderful support system and tons of information supplied by this organization. DS Network provides very informative speakers, social gathering, and a support forum that is wonderful. DS Network has truly been a wonderful guide on many levels in our life journey with our amazing little boy and I'm looking forward to participating in future events.

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What I've enjoyed the most about my experience with this nonprofit is...

The wonderful parent support groups & online support forum.

The kinds of staff and volunteers that I met were...

Exceptionally informative and friendly.

If this organization had 10 million bucks, it could...

Open a Down Syndrome Clinic in Arizona, help families that do not recieve therapy services, help educate teachers & professionals about children with Down Syndrome, the list goes on and on......

When was your last experience with this nonprofit?

2009

May 14, 2009

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May 14, 2009

My husband and I were blessed with the birth of our first child, a baby girl, on December 9, 2008. She was diagnosed as Down Syndrome at delivery which threw us for a complete loop. Our doctor introduced us to a mutual friend, also a mother of a baby with DS, who then introduced us to the DS Network. The DS Network has been such a blessing to our family. DS Network maintains a very informative website and offers valuable information by way of an email distribution list. We have found the other families to be supportive, compassionate, and willing to help out in any way possible. We are thankful for this new "family" and truly appreciate the ability to walk this path with such kind people.

The Great!

I've personally experienced the results of this organization in...

DS Network keeps our family (and others) up-to-date with current information associated with the early intervention programs. DS Network also has shown its effectiveness in scheduling activities hosted by medical and other professionals.

Ways to make it better...

If I had to make changes to this organization, I would...

I would outsource activities, much like is already being done, to pull professionals from various fields to keep educating parents about the latest techniques of working with a child with DS. I am especially interested in the early intervention process.

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What I've enjoyed the most about my experience with this nonprofit is...

We have met so many kind and caring familiies through this organizaion. We have also learned very useful information from various speakers and/or professionals who volunteer their time to educate the parents of children with DS.

The kinds of staff and volunteers that I met were...

The group has been so supportive to us from the time our daughter was born. We involved ourselves from the start when our baby was only 4 weeks old. Since that time, we receive emails from those we've met through the DS Network always wondering how our daughter is doing. Everyone is very positive and loves to see our daughter.

If this organization had 10 million bucks, it could...

DS Network could provide further educational opportunities to all families. It could also provide the various therapies specific to the early development of each child, including but not limited to, PT, OT, and speech therapy. The potential financial burden to families would be lessened given a well-funded organization.

Ways to make it better...

I have found DS Network to be valuable in their efforts in keeping families informed of events, state budget cuts, and networking.

In my opinion, the biggest challenges facing this organization are...

DS Network relies on donations. An organization as such is always looking for more money to help fund programs for our families.

One thing I'd also say is that...

Early intervention is crucial in the development of each child. We have only had the pleasure of working with one therapist, and yet I look forward to watching my daughter develop and grow to her highest potential. We hope that these early intervention programs are still available to special infants, toddlers, school-age children, and adults for as long as they need them.

When was your last experience with this nonprofit?

2009

May 14, 2009

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May 14, 2009

Down Syndrome Network has been a God-send to my wife and I as we've groped with the challenges of raising our 15 month old, Anabel, who has Down Syndrome. They've given us support emotionally with personal phone calls, but also in assisting us as we navigate the labyrinth of services that are needed.

The Great!

I've personally experienced the results of this organization in...

volunteer talks by an estate planning expert that changed how we're doing estate planning, and by a speech therapist who showed us some tricks to get our Anabel to drink from a straw, which will help her eventually develop language skills.

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What I've enjoyed the most about my experience with this nonprofit is...

Personal interest, phone calls and emails to help support.

The kinds of staff and volunteers that I met were...

Loving and motivated.

If this organization had 10 million bucks, it could...

Help those whose DDD services were just cut, so these kids don't get any further behind developmentally.

When was your last experience with this nonprofit?

2009

May 13, 2009

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May 13, 2009

Down Syndrome Network has made such a big difference in my life and the life of my family. My experience with DS would have been so much different, more difficult, and less meaningful. Down Syndrome Network has helped me emotionally, finding resources, education, friends and strength to face life. I cannot imagine people dealing with Down Syndrome without an organization like this one by their side.

The Great!

I've personally experienced the results of this organization in...

my own life

Ways to make it better...

If I had to make changes to this organization, I would...

feel overwhelmed... too much need and not enough resources

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the care and interest for one and other. even though we dont know each other in person, we are there to help....

The kinds of staff and volunteers that I met were...

amazing!

If this organization had 10 million bucks, it could...

touch so many people in true need!

Ways to make it better...

they get enough funding for medical services for kids/people with DS under one roof

In my opinion, the biggest challenges facing this organization are...

financially

One thing I'd also say is that...

I hope every family with a child with DS finds an organization like DS Network

When was your last experience with this nonprofit?

2009

May 13, 2009

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May 13, 2009

I have been apart of DSNetwork AZ since my son with DS was born 6 years ago. This group has been instumental in providing me and my family with timely information about helath concerns, education, and local resources. We have participated in seminars, fund raisers, and other awareness activities. Without DSNetwork I believe many parents would feel lost and alone in their pursuit to provide their child with the best possible chance.

The Great!

I've personally experienced the results of this organization in...

how it has grown in the past few years.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

access to information and experiences shared by other parents.

The kinds of staff and volunteers that I met were...

always willing to provide advise.

If this organization had 10 million bucks, it could...

open a DS clinic in Phoenix.

When was your last experience with this nonprofit?

2009

May 13, 2009

more

May 13, 2009

Without Down Syndrome Network, I wouldn't have met so many great families that are in the same situation that I am in- raising a child with Down Syndrome. From this group, I have been able to attend social activities from playgroups to Christmas parties to swim parties. I have attended workshops where I gained tips on how to potty train my child and most recently how to teach my children to read. This group is wonderful!

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The Great!

I've personally experienced the results of this organization in...

teaching parents with children who have Down Syndrome how to be better advocates for our children and how to improve our daily lives with our special children.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

meeting other parents and having my child play with other children where he can be just like any other child.

When was your last experience with this nonprofit?

2009

May 13, 2009

more

May 13, 2009

This is such an active and informative group. I have a son w/down syndrome. Whenever I have a question, or need someone's previous experience, everyone is so helpful. They have so many ways for us to learn, and many fun activities for the whole family. We moved here to AZ 4 years ago, and got connected before the move. I don't know what we'd have done without the DS Network!

The Great!

I've personally experienced the results of this organization in...

I have attended many of the education seminars, and have been able to implement many things in our daily lives that have helped us help our son. Also going to all the family fun nights is fun for everyone and gives me as a parent time to connect with other parents.

Ways to make it better...

If I had to make changes to this organization, I would...

follow those who have been doing such a great job.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

All the information passed along, and the peace of mind knowing there is a place to ask for help.

The kinds of staff and volunteers that I met were...

Wonderful and helpful!

If this organization had 10 million bucks, it could...

Reach more uneducated people about ds, and help even more parents and people living with family members who have ds.

Ways to make it better...

I had more time to attend more events!

In my opinion, the biggest challenges facing this organization are...

I don't really know, I am sure the recent economic challenges have affected everyone.

One thing I'd also say is that...

I really don't know what we would do without this support system!

When was your last experience with this nonprofit?

2009

May 13, 2009

more

May 13, 2009

I recently relocated to Arizona and contacted this organization which provided me with resources and contact information of services. I would not have known this information or been able to find it on my own. I appreciate there involvement with me.

The Great!

I've personally experienced the results of this organization in...

the people and resources that they led me to. They were perfect for what I needed. They also have kept me informed of issues that are important to my son and others.

Ways to make it better...

If I had to make changes to this organization, I would...

want a lot more funding

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

they respond quickly and informatively to all questions asked. Also, the chat site keeps a network of parents and professionals in touch with each other so you don't feel alone or abandoned.

The kinds of staff and volunteers that I met were...

compassionate, informative, and there. I was most pleased in the quick turn around of answers to my questions as well as the resources that others can provide.

If this organization had 10 million bucks, it could...

Develop a center, similar to the one in Illinois that deals with Down Syndrome. As my son ages, I see that this is a greater need than ever before.

Ways to make it better...

Could not have been better

In my opinion, the biggest challenges facing this organization are...

funding for a center that we could go to for issues and care providers that directly effect and know how to care for the people with Down Syndrome.

One thing I'd also say is that...

Down Syndrome has been around a long time and with all of the publicity about children with Autism and its prevelance it seems that we are forgotten and not as politically worthwhile.

When was your last experience with this nonprofit?

2009

May 13, 2009

more

May 13, 2009

Before I found DS Network, I did not have information to help me with new strategies I could use with my 4 year old daughter Erica. DS Network has been a very helpful and valuable organization for my family. DS Network puts together conferences and workshops to help families with needed information to help deal with the challenges we face with our special needs children. DS Network assists with providing and sharing information to families so that families don’t have to re-invent the wheel instead this organization helps families with providing support and sharing valuable information. I am proud to be a member of this wonderful organization.

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If this organization had 10 million bucks, it could...

continue working extremely hard to continue to serving families affected by Down syndrome. We could start Arizona's first Down Syndrome Medical Clinic. We could start up a program providing therapy for our families that have young children that do not qualify for services. We could provide more seminars. We could host Social family programs like a Holiday Party and a Back to School Pool Party. We could fulfill our dreams of having a Down syndrome Center in Arizona for families and support programs.

When was your last experience with this nonprofit?

2009

May 13, 2009

more

May 13, 2009

Down Syndrome Network has helped educate myself and my family to improve the quality of my daughter's future! Down Syndrome Network is a wonderful place to meet other families just like ours. It's nice to share our experiences and to know we're not alone.

The Great!

I've personally experienced the results of this organization in...

my life and how I deal with my daughter one on one every day! Thank you for the education seminars!

Ways to make it better...

If I had to make changes to this organization, I would...

keep up the good job!

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

its very nonjudgmental. We all love someone with DS that's why we're here!

The kinds of staff and volunteers that I met were...

very helpful and considerate! Nice to meet people with a smile!

If this organization had 10 million bucks, it could...

open a down syndrome clinic which could support our kiddos!

Ways to make it better...

I could attend more events.

In my opinion, the biggest challenges facing this organization are...

financial; money is always hard to keep a non-profit alive!

One thing I'd also say is that...

THANK YOU!

When was your last experience with this nonprofit?

2009

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  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
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3 hours of volunteer time for this nonprofit will...

Help with mailings, make copies, solicit donations for our silent auction, provide care for a child, provide transportation for young adults with Down syndrome, stuff goody bags for our various events... Volunteer