Blog

To Our SMA Family: Moving Beyond This

December 05, 2010 by Victoria Strong
Earlier this week our family and our foundation was publicly attacked on facebook by another SMA family who run their own foundation in a note they titled "Glass Houses." While the specific allegations are beyond ridiculous, the action of bringing this slander to a public forum created enormous hurt and destruction for our family and for a lot of people in the SMA community. We have struggled with how to handle this as we have no desire to incite more pointless, childish, destructive rhetoric.But it has become clear that as a family and as a disease community we need some serious healing and we hope we can all find a way to move productively forward and beyond this.

The truth is, we have felt bullied for months and this recent childish and baseless note on facebook created unnecessary added stress for our family and for many other SMA families when ALL of us have the very real stress of SMA which needs our immediate, 24/7 attention. We are still scratching our heads as to what the intentions of such a note could possibly have been and believe it did nothing but cause destruction in an already fragile, sensitive community. One thing is certain -- in no way did any of this benefit SMA. In fact, this type of inappropriate behavior only takes all of our eyes off the ball and diverts us from the important task at hand. But, we can't vote anyone off this island -- whether we like it or not, we are all stuck on this SMA island together -- which means we need to reflect, regroup, and figure out a way to coexist and operate in a civil manner. So, can we do that?

As so many mentioned in the comments to the "Glass Houses" note -- there are absolutely no sides -- we are all on the same team. We think -- with the exception of attacking or tearing down others -- that every effort in the SMA community has enormous value. Whether it be inspiring a song or making videos or running a race or putting on a conference or pounding the pavement on Capitol Hill or coordinating research with the NIH or trying to give yourself or your child the best life possible -- IT ALL MATTERS!!! Are we all going to like everything everybody does? Probably not. Are we all going to support everything everybody does? Probably not. But there is nothing positive about trying to create divisiveness. There is nothing to be gained by trying to tear any organization or family down. Rather, each of us should be focusing our energy and strengths on continuing to build on the incredible momentum that has been built by the SMA community over the last 20+ years in awareness, research, and support. We should allstop worrying about what others are doing or not doing -- that includes us, that includes the family who wrote the "Glass Houses" note, that includes all SMA organizations and families. And the truth is, even after being publicly attacked, we truly hope the family responsible and their foundation raise millions of dollars and help end this awful disease -- in a positive, productive manner. Because THAT is what is truly important. We just hope they stop trying to destroy others in the process.

We're moving forward and beyond this. There is so much positivity to be focusing on in our own lives and within the SMA community. Rather than dwell on the negativity of the past several days, we're going to continue to let the people we are, the way we live our lives, the things we've accomplished, and the people we surround ourselves with speak for themselves. In the end, that's all that really matters...

Talk About It

smile 'Lucy'
Posted by Helen on 2010-12-05 15:30:50
Well said! Let's move past this and kick some SMA ass - together!
Posted by Audra on 2010-12-05 15:35:06
Very well written! I know your family has been hurt by this, and for that I am sorry. I was hurt for you-
Posted by Hillary on 2010-12-05 15:45:35
Once again...you guys show how classy you are and that is why I have always felt so motivated, inspired by you as individuals, as a couple and as a family. You have in the words of Dr. Miranda Bailey on Grey's Anatomy "risen above" I am so honored to know you, to have become such great friends with you and to call you my california family as well as be affiliated with the GSF foundation. As far as my feet will carry me is as long as I will continue to run to raise money and awareness for GSF. I love you guys!
Posted by lauren lundy O'Connor on 2010-12-05 15:53:26
what Lauren said! You guys are the best.
Posted by stephen taylor on 2010-12-05 15:54:53
I am so proud to be able to call you my friend! You inspire me to continue to fight this disease and you give me hope for the future! I love you guys so much!
Posted by Laurie on 2010-12-05 16:02:02
THANK YOU GSF for ALL that you have done, are doing and will do in the future to help find a cure for SMA. You guys are truly an inspiration to all SMA families and I know for certain that James and I are SO grateful for all you guys have done to help raise awarness for SMA! Hugs to Gwendolyn from her friend Addy smile
Posted by Jennifer Garner on 2010-12-05 16:03:31
I did not know any of this was going on, as I must not be associated with this foundation on facebook. I am so sorry that your family and your foundation would come under attack. It seems utterly ridicioulous what with all that you both do for the SMA community. You continue to inspire and motivate me to help find a cure for SMA. Thank you for all you do and thank you for being you.
Posted by Jessica on 2010-12-05 16:22:26
I am so sorry you and the GSF were hurt, attacked and undermined. Like Jessica said I must not be associated with this group either. Your family, your sweet and precious girl Gwendolyn show us all was grace and poise are in a world where people are so quick to be hateful and ugly. Please know that there is a community of strangers who are blessed to be part of your fight!
Posted by Cherokee on 2010-12-05 16:29:32
Well done. You guys make me proud to know you. Hugs to precious Gwendolyn. xoxo
Posted by Lisa Moffat on 2010-12-05 17:21:10
So sad to here this.Really sad and if I might add,a tad bit angry as well. It never ceases to amaze me when this stuff happens.When those that are fighting the fight together,turn on each other.Been a part of it myself in our Down syndrome community and each and everytime,I think the same thing:How are we ever going to journey forward,if we are not united.When we begin to turn on each other,we have some serious problems. Sending you love and peace as you move forward and past this.As I know you will|,because that is what you guys do.You don't have it in you to do anything less.Kisses to Miss G.
Posted by Zoey's mom on 2010-12-05 17:50:07
My hope is for peace, unity and healing for all the families. I am sending any extra gift of strength to you, Victoria and Bill. You have done so much to raise awareness and funds for all the SMA families. Both you and Gwendolyn deserve love. Hugs
Posted by MT Grandma on 2010-12-05 18:03:17
It is unfortunate that sometimes people need to break and pull others down when they are feeling lost or out of control....however, you have taken the high road and as difficult as that is, it shows the true characteristic of the Strong Family. I hope that the "other" family takes time to reflect upon the words that you have written and use their energy for positive rather than negative. Like you said, you can't vote anyone off of the island so why not work positively together. The world needs more people like you. Be well....and stay strong.... Lisa wink
Posted by Lisa Prokopetz on 2010-12-05 19:11:49
I am so sorry to hear you, as a famil, and GSf have been attacked. It will never cease to amaze me that this negative immature jealousy exists in the world of non-profit. It's unnecessary. You are all fighting to rid the world of SMA, and the energy is so much better spent focusing on that. You have handled this abuse just I would imagine you to, with grace and positive focus on fighting SMA. You devote your lives to caring for Gwendolyn and fighting a terminal disease she has, and you do it with such a contagious spirit, you have folks such as myself joining the fight and happy to be a part of it. There is so much to be done to fight this disease--plenty of room for everyone to do something. It is truly and honor to have met you, if only through the internet. Blessings and love to you all, Mari
Posted by Mari aka "Thorney" on 2010-12-05 19:22:47
I feel proud to know all of you. Rising above instead of striking back isn't easy. But I agree we all have the same goal- END SMA! And all of us contribute to that, no matter what the scale. We can ALL make the same videos and sell the same hair clips!!!! WHO CARES??!! Hugs to you all, Strong Family.
Posted by Corinne on 2010-12-06 05:16:27
Y'all are a class act. But then I wouldn't have expected anything else. Love to you all!
Posted by Margaret on 2010-12-06 07:37:53
I hope everyone can move beyond.....we all need to be a TEAM.
Posted by Teri Taylor on 2010-12-06 09:14:50
Thank you!
Posted by Karen on 2010-12-06 11:56:35
Parenting a child with a devastating, terminal medical diagnosis is extremely stressful, and I acknowledge that everyone has their own way of dealing with your realities. Still, I have zero tolerance for cattyness, condescension, bullying, or general unprofessionalism in our fundraising and awareness efforts. I don't understand the point of any of this, and you nailed it--the divisiveness helps nobody. It is beyond ridiculous, and the success of any foundation steered by such childish behavior won't last for long. Good luck to them--to all of us--but I'm done dealing with that noise.
Posted by Cass on 2010-12-06 12:35:55
Way to go Strong Family! I was so angered by some of the comments. I have never seen such support for SMA research as I have the last couple of years thru the Internet. Being a person living with SMA for 43 yrs I have seen/heard a lot, been thru a lot and I have gotten so much inspiration from reading your Blog and other families stories. I don't care who fundraises more or less, blogs more, votes more, etc....all I care about is that it IS done! I want a treatment/cure. The petty talk needs to stop....we have "real" problems to deal with...like trying to survive in a battle w/SMA. God Bless you! Thanks Strong family...much love to you all!
Posted by Tammy Duke on 2010-12-06 13:18:24
I was shocked, as I am sure you were, that this type of negativity exists in an area where it can do some of the greatest damage toward children and their families that are already experiencing an overload of obstacles. However, just as I am shocked by this behavior, I am also shocked at the wonderful outreach of, kindness and goodness that exists in seemingly much more abundance. I am sorry that your family received this further burden, but as usual you took the high road. This is a difficult thing to do, but you have gained even more respect and admiration for your courage than I already had for your family, which didn't seem possible, I send you and your family further strength and thoughts of hope and courage to get through this. All the best from MN!
Posted by jillian on 2010-12-07 06:05:51
I am praying for this situation, yes for both sides only becuse it sounds like the other side needs some serious prayer. I can not understand at what lengths humans go to to hurt and tear down others on the HOME TEAM. That just breaks my heart. We love you, we stand beside you, we pray for you. You guys rock the SMA community. You have put yourselves right out front and we all should follow by example, not jealousy or pride, but by the high morals and standards you have lead by. Proud of you all for taking the "Higher" road.
Posted by Lisa on 2010-12-10 12:29:36

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