Gene Therapy’s Major Anonymous DONOR touched by AVERY”S BUCKET LIST

Today is a day of both overpowering grief and overpowering hope in the SMA Community. As we described in our previous blog post, beautiful Avery Lynn Canahuati, of “Avery’s Bucket List” passed away yesterday at just 5 months old. In their latest blog, the Canahuati family asked that donations be made in Avery’s honor to Sophia’s Cure Foundation to help fund Dr. Kaspar’s gene therapy program, which will be headed to human clinical trial by late 2012 or early 2013.
As many of you in the community will remember, last year, an anonymous donor generously gave $400,000 towards the pre-clinical work for the gene therapy program. That same donor has contacted us today, and touched by Avery’s story, has committed to match, dollar-for-dollar, every contribution made in Avery’s honor to Sophia’s Cure Foundation — up to $500,000 — so long as the FDA approves the program for a human clinical trial.
Now is our chance to raise ALL of the money needed to bring this promising program to a clinical trial for children with SMA. Please spread the word by sharing this post. If you were thinking about donating to help CURE SMA, now is the time.  Your contribution will have twice the impact.
And to Avery: your life may have been short, but your impact will be ever-lasting.

Comments

  1. Shellie Lopes says:

    Avery we will be forever grateful for you Angel. We will cure SMA!!!

  2. Brenda Barberena says:

    This just brought a HUGE smile to my face! This amazing little girl will most def have made the biggest difference a life can make, her life will have changed history! THANK YOU ANONYMOUS donor whoever you are for not only having a heart but for seeing the value in every humans life and for seeing the true potential of gene therapy as a cure for SMA! Both you and Avery, and every person who EVER raised or donated a dollar to SMA research will have changed the course of my future as a carrier and grieving mom to an SMA angel as well as all of humanity who carries this dreadful disease unknowingly.

    • Joyce De Leon says:

      My heart goes out to you! I have donated and I will continue to tell others about SMA. I am a volunteer at the hospital, so I will be telling everyone I know there to take a moment to make a donation that can save the life of an innocent little baby. Babies are our LIttle Angels! They teach us so much! They can be suffering . yet they will smile up at us with all that pure love glowing! My prayers are with you! Know that your little one is always with you, sending you the love and strength you so need! God Bless You!

  3. Sarah Handorf says:

    This is amazing. Thank you anonymous donar for helping Avery’s cause and helping this plan get into action!

  4. With your permission, if you’d let me, I’d like to write a poem for little Avery. Email me back and let me know if it’s ok.

  5. Angela Lower says:

    My heart was touched by Avery’s bucket list. After I found that Avery had become one of Heavens Littlest Angels, I decided that in her honor I will donate what I can each month. I changed my pinterest bucket list and added on a wish to get a tattoo of an Hello Kitty Angel, and I am adding on things that Avery should have had the time to do onto my bucket list.

    I hope that Avery’s parents know that so many people are praying for them. Hugs and prayers go out to all the families affected by SMA.

    Angela Lower

  6. Wow! What a wonderful thing for the anonymous donor to do! Let’s find a cure for SMA!

  7. Avery, for the little time you lived, you made a great impact.

  8. Cherie says:

    Thank you for touching my life Avery, and the fight to help so many others!

  9. Jessica says:

    So AWESOME thankyou so much to the ANONYMOUS donor for your generosity to the SMA community! Avery you will be missed but never forgotten and prayers and thoughts of peace & love go to the family of Avery as well!!!!

  10. jessica steele says:

    This story has touched my heart in a way that I can’t even put into words. To start, Anonymous Donor, thank you, for doing what you are doing. Because of people like you with your love, kindness and generosity, will allow children to beat this disease one day! To the family of Precious Avery, I do send my love and wishes for the best to you and your family. Avery has not only moved me but inspired me to help drive awareness of this disease. I’ve sit and cried while I read the story and watched videos to only come to the realization that god put her here to touch people’s lives, and just to know her story is a blessing to anyone and a true inspiration. She does live in the heart’s of the one’s that was so lucky to have been touched by her and her continuing journal.

  11. thank you Avery for letting us help your friends. God bless you!

  12. This is truly amazing and what a blessing. Thak you to this donor on behalf of Avery, Avery’s parents & family, anyone who has suffered from SMA, our community, and more. Her story was able to reach out to so many in just one month. I praise the parents for being so bold & strong during this. They will continue to fight for Avery & SMA. I know them and that is who they are as individuals!

    BRAVERY FOREVER!!!!

  13. what a brave little angle.you’ve done more to help in your short life then many can’t do in a lifetime. wonderful parents were blessed with an angle.i heard a bell ring today & new avery got her angle winds.r.i.p.little one.we will always remenber your buket list

  14. Carly Coonan says:

    I’ve donated for baby Avery and all those other little battlers with SMA.

  15. Tina Degner says:

    Thank you anonymous donors there are not enough words of gratitude that your gift has made to find a cure for SMA. Avery touched the lives of many including myself. Praying for all SMA’s children <3

  16. Robert Diaz says:

    My heart aches so much at the loss of that beautiful child, but i pray this is a rallying point for people to help find a detection and cure for this affliction. To her parents and family, we love you as we loved Avery, and i know her little smile is with us even now. One day we shall see it again. Rest easy little Angel Avery, you will never be forgotten.
    Till we meet again..

  17. Avery and her parents touched the lives of so many people worldwide. I commend her parents for their bravery and for the short life they gave her. God Bless the Canahuati Family.

  18. I’m so glad that through all the tears being spread for Avery world-wide, people are also stepping up to try and prevent these tears for all of Avery’s friends. Thank you! to the donor who is giving so much. And thank you for inspiring more of us to give!

  19. Patti Ahner says:

    What an incredible donor. Avery’s brief but blessed life for her and her parents should become a book that all can read. Her little face and smile are like an “angel” child.

  20. Danette Resendez says:

    My family just made a donation in honor of Avery Lynn Canahuati! Thank you for sharing your story!

  21. This is just Amazing. From a mother who has a rare disease child. This article just gave me chills. This is just such WONDERFUL news! I would just like to say thank you to Avery and her parents for spreading the Awareness. When all was lost Avery lead us to HOPE. Avery your purpose has been met you fought so hard. Now it is time for you to rest and watch the smiles you brought to the WORLD <3

  22. Ashley says:

    I started following Avery’s blog when I first heard about it. I was in total shock when I heard the news of her passing. She touched so many lives and I’m so grateful for the generous donor who contributed so much! We all need to do our part and raise more awareness to this disease.

  23. Shannon Werne says:

    I BIG HUGE THANK YOU to the ANONYMOUS Donor. I never knew of SMA until I caught wind of Avery’s story. I’m heartbroken over Avery. I can’t get her out of my mind and it hurts knowing there are other families going through the same thing.

  24. Thank you for sharing your beautiful daughter with all of us. I pray for peace to come to you in knowing all that you did for her will indeed help so many others. Few people are blessed with the ability to see angels on this earth….

    I am deeply sorry for you loss, I hope you get all the support you deserve in your time of need…obviously you gave to Avery all the love that every baby could have.

    Bless you.

    I will certainly be making a donation…thank you Avery for showing me so much.

    Cayne Howard

  25. Robyn Fountain says:

    I just made my small contribution in Avery’s name. I want to thank Avery’s parents for sharing her story. I had never heard of SMA until I read about her blog. While I cried this morning upon learning the news of her death, I rejoice that her family shared her with us-an amazingly thoughtful and selfless act. I will tell my friends and family and urge them to donate in her name. Bless you, Avery. Thank God you are in the arms of Jesus, healthy and whole. You HAVE made a difference in this world.

  26. nicole lopez pemberton says:

    Wow Thanks be to the Anonymous donor such a hugh blessing and what a wonderful heart you have!!

    I hope that the parents of avery know that her life has meant so much to so many people all around the world..Thank you for giving so many people hope….God bless you :)

  27. Barbara D says:

    Sorry, I meant to add to my previous post – Thank You to the generous Anonymous Donor – and to Avery’s family for introducing that beautiful little angel to the world and making us aware of SMA. Be at peace, little one. Blessings.

  28. I am amazed by the more-than-generous donor! Such an inspiring little girl. She died young and early, but she will live on in the hearts of many, and by her truly wonderful story, will help to raise money for research, and hopefully a cure, for this devasting disease and help other babies.

  29. mommiev says:

    This is great news!!! Hopefully with more publicity more people can come to realize what this is all about and people no longer have to watch their loved ones suffer through this awful thing!!!

  30. Jolanda and Todd says:

    Donated today in Avery’s memory and also we own a camp and catering business and all recyclables will be cashed in and donated by years end roughly 2500. Thank you so much and we are spreading the word throughout Alberta,Canada. Avery sweetheart you were sent to this Earth for a very special reason. Rest in the Lord’s arms sweet child, we will do the rest of the work here.

  31. Adriana says:

    God bless Baby Avery! You have been an inspiration to so many during your 5 months on this earth. You have brought tears of joy to so many & you will never be forgotten!

  32. Ellif Loke says:

    R.I.P little angel… thank you for spreading the informations abt SMA… a BIG thank you to you…

  33. What a powerful person Avery was and continues to be! Who else could mobilize so many so quickly! Avery rocks!! Avery’s parents are some of the strongest people ever : so full of love, vision, purpose and humor. Now, they are full of shock and grief. We hold you in our hearts.

  34. I too only learnt of this condition thanks to Avery’s parents making news with the heartbreaking bucket list they made for there daughter Avery . Learning more about this condition breaks my heart for all those afflicted with not only watching their precious and so brave children having to live and die with this disease but have the hard task of waiting and hoping for treatment and cures via kind donations. This is such a beautiful and terrible world we live in to have to see children struggle to live whilst watch other places on earth squander millions on wars , weapons and yet illnesses still go unresolved and these lives that so desperately want to live just can’t because no cure is found. It’s just embarrassing to be disease free sometimes when so many fight for their lives everyday . That’s why we all have to give what we can and tell others too , my family know not to buy me gifts but to donate instead to a charity that could save a life that’s what I call a real fine gift!! RIP Avery and my heart goes out to all those that suffer on a daily basis ,there are people out there that shed a tear with you . Hears to a cure !!!!!!

  35. Today I donated in Avery’s memory. My eyes fill with tears whenever I think of her and her story. I hope a cure is found so parents and children do not have to go through the pain. Rest in peace beautiful baby girl, you will never be forgotten.

  36. Raynesha McGhee-Reed says:

    I have Donated $1.00 2 Avery’s Memory & What Can I say about this Precious Baby Girl,She’s Adorable & Bright & when I’ve Heard the News that She Died On Tuesday,I Have Cried My Heart out.Avery,I’m Sure Your Havin a Better Life up in Heaven & You’ll Always be In My Heart 4ever :,(

  37. Lynn Gastineau says:

    Matching donor = whoever you are= thank you so much. Avery’s parents are two of most loving, un-selfish people I have ever known. Everything they have done is to fight SMA on behalf of the daughter they loved so very, very much. They have wanted nothing but happiness for their daughter while she was here and to bring an end to SMA. I am sure Mike’s Mom and Dad and Laura’s brother were there with open arms to greet Avery and make her journey into Heaven full of happiness and love. That picture brings a smile through the tears.

  38. Norman Solow says:

    I never heard of SMA until I read “Avery’s Bucket List” and then about her very untimely death. I recently donated so that some day there will be a cure.

    Children are our most Cherished and I really had tears in my eyes and had to take a walk when I read that Avery had passed away.

    No child should have such a short life so I offer my most sincerest condolences to Avery’s family and really thank them for there public sharing of what loving a child is all about.

    Shalom,

    Norman

  39. It touched me so much to hear about little Avery. God blesses us so much with these little children with SMA. Avery always was and still is a AMAZING BLESSING!!!! I have a cousin with SMA and we had a Bake Sale and raised dollars for SMA last week. I hope the money helps SMA and Avery’s cause. Spinal Muscular Atrophy is going to be CURED. My dream is for SMA to be cured. Avery and all the little kids in the world with SMA make a really big difference. I am 9 years old and I now that SMA has changed my life and Avery has made a big difference in my life. :) Avery, even though I’ve never met you, you are loved and missed but you are still treasured in our hearts forever and ever!!!!!!!!!!!!!!!:)

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