Frequently Asked Questions

What is a Hope Advocate?

A Hope Advocate is a parent who has a child with Down syndrome, who agrees to use their story to bring hope to a new parent of a child with Down syndrome. They sign up to become a Hope Advocate, and receive a personalized Hope Kit in the mail. When their Hope Kit arrives they give information to their medical professional and agree to be a resource to their doctor and their patients. More information will be included in the Hope Kit.

Why Do I have to be the Parent of a Child with Down Syndrome in Order to Be a Hope Advocate?

One of our goals is to connect every OB/GYN in America to a family raising a child with Down syndrome, who in turn, can connect their patients to them. We call these families Hope Advocates. If you aren’t the parent of a child with Down syndrome there are still other ways you can help us bring hope to others. Please drop us a line, we’d like to hear from you. Also, please be sure to sign up for our email list so we can stay connected!

Why Does My Child Need to be Older than One Year Old in Order to Become a Hope Advocate?

First, thank you for your interest in becoming a Hope Advocate! The first year of being a parent in general can be a lot of work. We want you to focus on your child the first year of being a parent of a child with Down syndrome. This first year will give you a lot of important experience that you will be able to use as a Hope Advocate.

How Do I Select a Good Picture for my Hope Announcements and Hope Advocate Contact Cards?

Every Hope Advocate will receive customized Hope Announcements and Hope Advocate Contact Cards in their Hope Kit. For the Hope Announcements we suggest a picture that shows you child’s personality, with good lighting. There will be text printed on the left side of the card, so it’s best to choose an image where your child is centered or on the right side of the image works best. For the Hope Advocate Contact Cards we suggest using your own picture (or a picture with you and your child.) Our hope is your medical professional gives your Hope Advocate Contact Cards out to their patients whose child is diagnosed with Down syndrome, so you want to picture to represent you. This is one of the first times a new parent will “see” you. If we can help, please contact us.

Comments 15

  1. I’m a grandma with down syndrome child she lived with me her first 3 years and have her often I was there for heart surgery I would love to help parent understand about down syndrome I was scared but now I know I have been blessed with my beautiful Dee Dee

  2. I am not a parent of a Down sydrome child. I am a grand parent. My grandson is 6 years old

  3. I am a Mother of a Down syndrome child, she has had 11 surgeries and I know what we all do for our little Angels. I am here for support

  4. I had a super hard pregnancy and my baby is 4months old… but ive learned a lifetimes worth of knowledge thru the Pregnancy, complications, his 3 surgerys and daily G tube feeding, and starting to oral feed. I cried for him to take in less than 1/4 of an oz…
    I prepared to say goodbye him, and did as I was told to say my final words.
    I delivered at 32weeks due to his rather rare yet DS related.
    So that’s really assunptive to think i dont yet have a story to tell…
    I dont think that’s fair… I am a mommy and ive never loved anyone as much as him…
    Why disclude us with babies?… you think As a support group for people with down’s intermune be disincluding people yourselves but here you are.
    Because my 4 month old has downs syndrome,
    I’ve been disincluded by several other groups for child/ parents in general… I did not think this would one of them.

  5. I am a sister of someone with Down Syndrome. She still resides with my aging parents. She is 56 yrs old and we believe she shows signs of extremely rapidly declining dimentia. Times are very tough currently are I am reaching out for help. My parents want her to always live with them but times are more than tough. We need answers.

  6. I am 24 and I have Down syndrome. How can I help? I’m on Instagram @morelikeyouthandifferent if you want to message me.

  7. I’m a mother of a 49 yr old daughter with Down Syndrome. I did not have a good experience with her pediatrician 4 hrs after her birth. He was hurtful describing her being a mongoloid saying I needed to place her in an institution. I hope no other parent ever has to go though that. Placing her was not an option for us and the journey with her over the years have brought us such blessings. Now in my 70’s, she is the brightest light in my world. She’s smart, helpful, kind, loving & is loved by so many.

  8. I would love to share how proud I am of my son Tylee. And what joy and happiness he has given to myself, and his sisters. Even more important,
    The experience of other people finding what a treasure they can be. The acceptance to others around him, and what a wonderful learning
    experience it can be for his classmates. Tylee is now 12 years old., Ive known he had downsyndrome from the fourth month of pregnancy.. I would love to share our story, and share what a blessing they are.

  9. I am a 68 mother of a 35 year old son with Down Syndrome. I usually get a call from a friend every so often to talk to a new parent and having a wonderful looking kit with positive images would be wonderful!!

  10. I would like to give a monthly donation to your organization in honor of my great nephew with Down syndrome. He is almost 4 months old and doing well. How do I do this?

  11. I am the mom of a son who was born with Down syndrome. He is now 22 years old and I wouldn’t trade him for anyone! 🥰

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