Raising awareness and support for people suffering from rare diseases

P R O G R A M S

  • Add a Little Hope

    Up until 2008, we gave the money raised at our events directly to the UMDF for research on mitochondrial diseases. In 2008, we made the decision to give the money raised at our events directly to the families. We wanted to help on a more personal level to help families who are dealing with rare diseases and want to make a difference in their daily lives. We offer travel grants to try and ease the financial burden of traveling, often out of state, where many specialist are found and give them hope. We help with hotel, gas, flying, and meals expenses. If you need an application for a financial grant click on the link. Grant Application

  • Savannah Shares

    We like to refer to these jean totes as 'Gene' Totes. After Savannah went to Heaven,we found out that her father and I had passed on recessive genes to her that caused her disease, Alpers Syndrome, a very rare mitochondrial disease. While living with our daughter at the hospital for 3 months, I saw the need for many items that weren't always accessible to someone living away from home. We hope the recipients of these 'Gene' Totes will find the items useful during their stay.

    We deliver 100 'Gene' Totes every quarter.Our first delivery to the NICU and PICU at Mercy Hospital with our 'Gene' Totes was in October of 2015. Many times the totes are gone within a few weeks of one of our deliveries. The need is huge! The comfort and encouragement of these simple 'Gene' Totes brings warmth to the life a child during a difficult time.

    None of this would be possible with out the help of Barbara's Consignment Boutique which donate jeans; Barb, Nicole, & Deb who spend countless hours sewing together the 'Gene' Totes; and of course everyone who donates the items that are placed in the 'Gene' Totes!

     

    Top Items Needed Most For The Gene Totes

    - Activities: small puzzles, coloring books, crayons, colored pencils word searches, card games, books, Hot Wheels, etc.

    - Snacks: non-perishables items that are kid friendly & individually packaged(watch the expiration dates) - for example; fruit snacks, gum, mints, chips, Starbursts, M & M's, Slim Jims, microwave popcorn, etc.

    - Toiletries: travel size soap, shampoo, lotion, mouthwash, deodorant, chap stick, etc.

    Feel free to download and print the Full Item List for Totes 

    Other Ways You Can Support These Gene Totes

    Clean out your closets and take unwanted items up to Stuff's etc. Stores in Clive or Ankeny and drop off those items for Savannah's Hope. A percentage of the salesfrom your items go to help the Savannah Shares and Savannah Cares program

    If you would like to make a monetary donation or buy a T-shirt to help please click on this link: /shop/

  • Savannah Cares

    Currently through our Angel Totes, the Savannah Cares Program is offering assistance for grieving families. The Angel Totes are care packages made specifically for families who have lost their child at any age. Our first delivery of our Angel Totes to the PICU and NICU at Mercy Hospital was June 15, 2016.

    Items included in Angel Totes:

    Book: I Will Carry You -a powerful story of ultimate loss--a parent's loss of a child--interwoven with the biblical story of Lazarus, helping those walking through the difficult seasons of life to mourn and still have hope. An angel book mark is also included.

    Frame -Also included is a smallpicture frame,withan angel in the corner, to display a picture of their precious angel.

    Pens & highlighters to write in journal and highlight things in the book, I Will Carry You.

    Forget-Me-Not seeds with a note on them.

    Footprint book -This footprint book is a very unique gift. The book pages in this have been carefully folded a certain way to make the end result, footprints. This is personally done by Savannah's mom, Willie.

     

    Ways You Can Support The Angel Totes

    Clean out your closets and take unwanted items up to Stuff's etc. stores in Clive or Ankeny and drop off those items and mark them for Savannah's Hope. A percentage of the sale go to help the Savannah Shares and Savannah Cares programs.

    If you would like to make a monetary donation or buy a T-shirt to help please click on this link: /shop/

     

  • Courageous Cards

    On Savannah’s birthday in 2019, Savannah's Hope filled a notebook full of Walmart and Target gift cards to the Pediatric Intensive Care Unit! These cards are called Couragous Cards. Every year this notebook is filled back up on Savannah's birthday, so we collect the gift cards through out the year from donations.

    Each time a child goes through something scary or painful, they will get to choose a gift card from the Couragous Card Notebook. The cards will give them something to look forward to: A Shopping Trip. 

    Please Send giftcards to
    Savannah’s Hope
    3603 E 41st Ct
    Des Moines, Ia 50310

    *The cards don't have to be just from Target or Walmart!